Rainbows and Recurrent Pregnancy Loss

I've written this blog in my head so many times over the last three years, but if I ever actually post it, it's only because our rainbow has finally arrived after a long storm.  For those not familiar with the language used in support circles for women who have lost babies and pregnancies, a Rainbow Baby is a baby born after the loss of a previous pregnancy.

Grateful doesn't begin to describe the emotion we feel to finally be able to welcome our rainbow baby into our family.  After the birth of our first son, we lost six babies at various stages of pregnancy and in celebrating the birth of our rainbow baby, I also have a strong desire to acknowledge more publicly the angels that came and went before him and paint a picture about why we chose not to make any grand announcements over the course of this pregnancy.

I also feel compelled to offer a small sliver of hope to the other women, like me, who in the darkest storms of recurring loss, desperately scoured the web for stories that would give them a little light to hang on to - a reason to keep hoping through every new round of bloodwork, every terrifying positive pregnancy test, and every heartbreaking ultrasound or visit to the ER.

Many of our friends and family didn't know that this was my eighth pregnancy in 3 years.  Pregnancy is not a happy, glowing time for me.  A positive pregnancy test does not mean I get a baby at the end of 40 weeks.  A positive pregnancy test is filled with our hopes, dreams, anxieties, and fears all in one very delicate package.  For me, there is no "safe zone" when the risk of loss is reduced in pregnancy.

It's not that I was ashamed of any of my losses. I knew there was no shame in what was happening and I had known enough people who had experienced a miscarriage to know that it was a deeply painful, personal, and an unfortunately common experience.  Still, keeping my pregnancies and losses private was the easiest way for me to save myself from having to relive my pain and from having to hear well-intentioned but not very helpful advice, or awkward attempts at words of comfort.  It was the easiest way for me to get through it while I recovered and tried to move forward.

Although information about miscarriage is readily available and has been receiving a lot of very important attention in an effort to eliminate any taboo associated with miscarriage, recurrent pregnancy loss (RPL) is much less frequently discussed and often even professionals aren't sure what to make of it.

My first pregnancy came easily and was a relative breeze with few complications. When my husband and I were ready to grow our family again, pregnancy came easily, but it didn't stick.  After my first two losses, I was a little confused and definitely heartbroken, but hopeful and confident enough to pick up and try again.  I was told by my doctors that early losses happen all the time and that many women don't ever know they are experiencing miscarriage, believing it to only be a very late period.

After my third loss, I read the book Coming To Term in one sitting and resolved to figure out what was going on with me. The next day, I requested testing. The standard lineup for RPL testing includes CBC, Liver Function Tests, Renal Testing, Thyroid function, Glycemic testing, Autoantibodies, ANA/ANF and dsDNA Anticardiolipin antibodies – IgG IgM, Thrombophilia Screen, Chromosone Karyotyping (for both the Husband and I) Antithrombin III, Protein C, APC resistance, Protein S, and a litany of physical exams to rule out physical reproductive system anomalies.  Results came back with nothing very significant with regard to miscarriage - I had a barely positive ANA and discovered a heterozygous C677T MTHFR gene mutation, so I was sent to a Rheumatologist to explore the ANA issue and an Internist who had special training with MTHFR mutations.   I also started acupuncture - just to cover all my bases.

My Internist also ran a separate panel of tests and although my thyroid screens were all normal, noticed that my thyroid looked slightly enlarged and sent me off for a thyroid scan.  She also told me to start taking a daily aspirin and a methylated folate for my MTHFR.  Scans showed a tiny nodule on my thyroid - too small for a biopsy - but I still have to return for annual scans.  The panel of tests revealed some notable vitamin deficiencies, so I added a massive amount of supplements to my regimen and had to return for blood testing every 3 months to track improvement.

The Rheumatologist ran three more rounds of tests. My ANA wasn't a positive anymore, I was not showing any signs of autoimmune or rheumatic disease, but in her panel of testing she had one lab show up barely positive for Sjögren's Syndrome (I had to do my testing at two separate labs since apparently various labs have different criteria for positive and negative results) while the other lab showed I was negative.  Sjögren's Syndrome wouldn't have been the cause for my losses, but if I were to get pregnant again, it's something that required extra monitoring and ultrasounds.

I used to have anxiety about needles and blood draws.  Now I don't even flinch.

Around that time, I discovered I was pregnant again.  We saw the baby's heartbeat on an early ultrasound and were thrilled to think that our RPL nightmare was over.  Not long after, we found ourselves in the ER because my then 14 month old son had experienced anaphylaxis and we were entering the nightmare of life-threatening food allergies.  I remember sitting in the ER with my son on my chest trying to remind myself to stay calm for him and for the baby.  Reminding myself that stress is not healthy for the baby.

We made it out of the first trimester with the help of progesterone and aspirin, but otherwise without a hitch.  My anxiety was through the roof the entire time and we had extra ultrasounds to make sure everything was OK before making a big announcement to our families at Christmas.  The Monday after Christmas, we went in for a routine visit and ultrasound.  The ultrasound tech started the scan and froze - she said she needed to stop and get the doctor.

The Husband and I were confused, the baby's heart was clearly beating, so what else could possibly be an issue? The baby's bladder was enlarged and we needed to be seen by a Maternal Fetal Medicine (MFM) specialist immediately.  We were in the MFM's office within an hour, scanned again and told that the prognosis was not good.  The baby had one of two possible conditions that were likely incompatible with life considering the severity of the defect they saw on the ultrasound:  Megacystis microcolon intestinal hypoperistalsis syndrome (MMIHS), or Fetal posterior urethral valves (PUV).

The MFM also told us that in his experience termination was the only option.  We explained that was not an option for us and he added that there was another MFM within a reasonable driving distance who might be willing to attempt treating these conditions in utero with the hopes of having a baby born who would need corrective surgery at birth and likely lifelong medical care. The MFM had us meet with a genetic counselor who explained our options again and gave us more information about Perinatal Hospice and Palliative Care. We then made an appointment with the other MFM.

What followed was confirmation of our baby's poor prognosis, a genetic test that indicated elevated risk of Trisomy 18, a set of bladder drain procedures, an "inconclusive" amniocentisis, and ultimately a premature rupture of membranes (PROM) that had me on bed rest for a few weeks hoping that the membranes would heal and amniotic fluid levels would return to normal.  We were told that our baby no longer had a heartbeat at 17 weeks and because the baby was too big for the standard D and C procedure, we would have to consider either a D and E or a delivery.  After a few days of careful consideration, I called up my OBGYN and asked to be set up for delivery.

To be honest, that delivery and our time in the hospital was perhaps the least traumatizing and most healing part of that entire pregnancy.  I had no idea that our hospital had specific training for the staff in labor and delivery to deal with pregnancy loss and stillbirth.  They were incredibly sensitive and they never referred to the baby as anything but our daughter or our baby.  They brought in a tiny pink hat and blanket for her and printed out a hospital band for her and made us a certificate with her name and the date of delivery.  They left us in the room with her to take photos and hold her and admire her perfect tiny fingers and toes. They sent us home with booklets for support and a book to explain to our son what had happened.  We left the hospital heartbroken, but feeling well cared for and loved by people we had never met before.  We had her remains cremated and placed in a tiny pink urn.

I sort of lost my mind a little bit after that.  I was walking around apparently functioning like a normal human, but I was pretty sure I was not an actual human.  This loss combined with the reality of my son's recent life-threatening food allergy diagnosis convinced me that not only was I never going to have another child, but the child I did have was surely going to die from anaphylaxis and I would no longer be a mother. I sobbed to my priest and confessed my anger about how it was impossible for me to understand what the point of anything was anymore. I remember talking to my OB about all this, telling her that I was actually OK now, and smiling about it all while tears rolled down my face for some reason I couldn't explain.  She prescribed a low dose of sertraline and said I needed to come in for more follow ups.  Time - and perhaps more importantly, that God-sent little blue pill - slowly lifted the fog for me and while I am forever changed and still get triggered by certain things, my feelings are mostly back to normal.

I started having heart palpitations after that, so I was now seeing a cardiologist regularly along with my rheumatologist, and the internist - making me the youngest person in almost all of those doctor's office waiting rooms - and meaning I had at least one doctor's appointment every 2-3 weeks. I had a lot of doctors trying to figure things out and still nothing that definitely explained why we had lost so many pregnancies after an uncomplicated first pregnancy.

Ten months later, we were pregnant again. We saw a strong heartbeat on two different early ultrasounds - I was being seen at extra appointments and things were going great.  My hopes climbed and I was getting excited about our baby being born a mere month after my brother's first baby would be due.  At 10 weeks, on Christmas Day, I started spotting and ended up in the ER to confirm what I had feared.  Pregnancy loss number 6.  Because it was a holiday weekend and nothing could be scheduled until Monday, I miscarried at home naturally.

We were then referred to a Reproductive Endocrinologist (RE) for even more testing.  She ran a new panel of bloodwork and set me up for tests to check the physical condition of all my reproductive organs.  She did discover, however, that I had a rapidly growing uterine polyp that appeared over the course of my treatment with her, so I was set up for surgery to remove it and have it tested.  Once in surgery she discovered it was larger than expected, and had grown to cover one of my fallopian tubes, but thankfully was not cancerous or cause for other concern.   In her book, I was pretty much in tip-top shape for pregnancy and everything was normal, so no real answers - she said it was probably just bad luck.  She sent us off without much additional instruction, only to say we could start trying again in 3 months and to call her the minute we got a positive pregnancy test.

We waited a little longer than 3 months to recover emotionally and physically, but by the end of July we had a positive test and were started on the progesterone and aspirin regimen, as well as weekly ultrasounds and bloodwork.  Things got off to a rocky start and I was on bedrest for a few weeks thanks to a subchorionic hemorrhage but it eventually resolved and I was back on my feet.

At one point I was at the office and I had some very faint spotting that was similar to how my last miscarriage on Christmas Day had begun.  I got in my car to drive to an appointment (sure that I was losing this pregnancy as well) and got stuck in traffic behind a white Prius with a vanity plate that read "BIRTH."  I thought the universe was playing some sick joke on me and I sobbed all the way to my appointment.  Maybe the universe was actually sending me a sign to not lose hope yet.

I resolved to simply be grateful for every moment I knew the life growing inside of me.  Every time I wasn't spotting, I would say thank you.  Every time I felt like I was going to vomit and couldn't get out of bed, I'd say thank you.  Every time we had an ultrasound and the baby was still there, I'd say thank you.  It got me through day to day and even though I couldn't bring myself to plan ahead, read pregnancy books, start preparing, or look at baby clothes and think of baby names, I was thankful for being pregnant just one day at a time. Not being hopeful about pregnancy had never prevented any of my losses, so I was hopeful one moment at a time.

I had weekly appointments and ultrasounds with my RE until I hit 13 weeks.  I then "graduated" to a MFM for bi-weekly ultrasounds while I continued to see my regular OB for the usual appointments. I started weekly physical therapy for debilitating sciatic joint pain and adductor strain brought on by pregnancy (which I was also thankful for - even if my hips decided to drift in opposite directions thanks to pregnancy hormones.) And after what seemed like an eternity, we found ourselves in the third trimester, and finally in the realm of having a baby that would come to term.

To have hit 24 weeks and have a 50% chance of viability seemed like a dream come true. To be worrying about my pregnancy induced hypertension (PIH) at 35 weeks felt like an incredible blessing.  To be scheduled for induction at 39 weeks was like winning a jackpot.  I was officially pregnant longer than I had ever been before - including my son (I was induced and delivered at 37 weeks with him, also for PIH) and although the daily regimen of supplements and aspirin, blood pressure checking, 3x a week appointments, and anxiety over kick counts was exhausting - it's the best kind of exhausting and it's hard to complain about it.  I'm even grateful for every pain of labor and even the hell of a magnesium drip after his delivery.

I still don't know why we lost 6 pregnancies and I'm not sure I ever will.  The sad fact is that when it comes to recurrent pregnancy loss, the majority of couples will never have an explanation and no tools to attempt to prevent it from happening again.  For most of our pregnancies, we weren't specifically trying to get pregnant, but it didn't change the fact that we wanted every one of those babies and that they were so desperately loved.

I did everything I could, but there was no one treatment, no single doctor, no magic bullet that changed the outcome. I wish I had an answer for other couples that are struggling with RPL, but all I can try to offer is a story of hope. It's difficult to understand the pain of RPL until you've lived it and I don't wish that upon anyone. It could have been that with all my doctor's appointments and nutritional supplementation, I was perhaps taking better care of my health than I ever had before - or it could have just been and end to a streak of misfortune.  I'll never really know, but I'm grateful for my doctors for trying their hardest to figure it out, I'm grateful for the women in my support groups who have endured the same pain and shared both experience and strength, and for the women who shared stories of their rainbow babies that kept me from falling too far into a pit of despair when hope seemed so impossible and pointless.

And I'm grateful for rainbows.

Food For My Kid with Multiple Food Allergies

This is the last of my Food Allergy Awareness Week Posts and I thought I'd go through the process of what it's like to buy and prepare food for my son.

To start, when you look at it all at once, it's a lot to manage and it's all very overwhelming.  Although it would have been great to somehow download this right from the get go, we are still learning the nuances of feeding our kid with multiple food allergies.  This is exactly why we don't expect anyone else to be able to cater to our needs when it comes to food. The best thing anyone can do to make us feel welcome and comfortable is to just not offer any food to our son and to not hold food or be near food when playing with him. An extra level of comfort is added if everyone washes their hands and wipes their mouths after eating (or drinking - especially beer), but ultimately we know we're in charge of keeping him safe so we try to do all the hard work, but appreciate any offered support. 

Here's how it goes when we shop for O's foods:

Some of O's allergens are covered by the FDA's requirementfor labeling and should be listed in the ingredients using "plain English" as Wheat, Peanut, Tree Nut, Egg, or Soy.  They essentially have two options for labeling: the word “Contains” followed by the name of the major food allergen – for example, “Contains milk, wheat” – OR -- in the longer ingredient list in parentheses – for example, “albumin (egg).” 

Allergy families tend to only trust certain brands after a while because there are frequently errors in labeling and you've got to read every ingredient anyway every time since ingredients and formulas change all the time.  ALSO, the use of advisory labeling (i.e.,  “may contain,” “processed in a facility that also processes,” or “made on equipment with”) is - at this time - voluntary and optional for manufacturers. There are no laws governing these statements or what they mean, so they may or may not indicate if a product could have come in contact with a specific allergen during the manufacturing process. So if they don't plainly state that their product is made in an allergen-free facility, we have to call or email the company to make sure that they don't share manufacturing lines with the allergen because there is a risk of cross contact with the allergen. 

We also have to call the company to make sure that anything like "natural flavors" or "artificial flavors" or "spices" or "natural colors" does not contain gluten (wheat, barley, rye, some oats) because a "gluten free" product can still technically contain wheat and barley, and rye in small amounts that might not affect someone with gluten intolerance or celiac disease, but could be enough to trigger a reaction in a person with IgE mediated allergy.  And since those non-wheat, gluten containing grains are not included in the top 8 allergens that must be labeled clearly, we need to double check those.

Anyhow.  Onto the list of O's allergens:

Wheat (aka. Bran, Bulgur, Cereal extract, Couscous, Durum, Einkorn, Emmer, Farina, Germ, Gluten, Kamut, Matzoh, Matzo, Matzah, Matza, Malt, Seitan, Semolina, Spelt, Triticale, Wheatgrass, Wheatgerm, Wheat berries, gelatinized starch, modified starch, modified food starch, starch)

Peanut (watch out for Lupine flour - not a peanut, but high risk for reaction in peanut allergic people.)

Tree Nuts (aka. may be labeled as: Almond, Beechnut, Brazil nut, Bushnut, Butternut, Cashew, Chestnut, Filbert, Ginko nut, Hazelnut, Hickory nut, Lichee nut, Macadamia nut, Nangai nut, Pecan, Pine nut, Praline, Pistachio, Shea, Walnut)

Egg (aka. albumin, lysozyme, ovalbumin, surimi)

Soy (aka. edamame, miso, natto, shoyu, soya, tamari, tempeh, tvp, tofu, vegetable gum. O can eat Soy Lecthin and Refined Soybean oil)

Coconut (can be labeled as a Tree Nut)

Barley (Not covered by FDA's labeling laws and can be listed as: brown rice syrup, caramel color, malt, malt vinegar, maltose, fructan, brewer's yeast)

Rye (Not covered by FDA's labeling laws)

Legumes (Not covered by FDA's labeling laws - O had a reaction to green beans and lentils in the last six months. We're waiting to confirm these allergies with a test at his next allergist appointment.  Until then, we're avoiding those and other legumes which we don't eat regularly including adzuki beans, black beans, soybeans, anasazi beans, fava beans, garbanzo beans (chickpeas), kidney beans, lima bean, etc.)

*Oats (Not covered by FDA's labeling laws.  *O is NOT allergic to oats, but anything with oat in the ingredients must be marked as gluten free or they can not be used because there is a very high risk of cross contamination in manufacturing.)

Mind you, the "Plain English" label laws only apply to food - not to cosmetics, bath and body products, or cleaning products - so for any of that stuff, you have to really get familiar with how all of the above might be used as a derivative in various products that you use every day.

Then, after all the label reading to confirm nothing up there shows up in the food we're trying to buy, there's actually preparing the foods.  Cross-contact and cross-contamination with allergens in the kitchen is a big reason allergy families don't eat out and don't really eat food prepared elsewhere. 

For example, a knife that has been used to cut a regular bagel and is only wiped off or rinsed with water before being used to cut a gluten free bagel could still have enough wheat allergens remaining on the knife to cause a reaction in a person who has a wheat allergy.  All equipment and utensils must be cleaned with hot, soapy water before being used to prepare allergen-free food. Even a trace of food on a pan, spoon or spatula that is invisible to us can cause an allergic reaction.  Certain items, like serrated knives, cutting boards, cracked stoneware, mesh strainers, which can not be totally cleaned in those tiny nooks and crannies should probably not be used.

It's a lot to process - we've had several good friends and family ask us what they can buy for O to have at their parties. We generally bring his safe foods along with us but if you want to offer some safe foods just keep them in their original packaging for us to read. Anything that's not in the package is usually not considered safe. We are beyond grateful that anyone ever even considers accommodating us at an event where there will be a lot of food, but we never expect it because we know just how hard that work is.  That said, one or two safe snacks can go a long way in making us feel like part of the fun and just bear with us as we chase O around watching everything he touches while wiping things down.  It's what we do!

My Favorite (Allergy Friendly) Things

Hand in hand with my post earlier this week looking at silver linings of food allergies, we've discovered a world of products and companies that are sensitive to the needs of individuals with allergies.  They've become such staples in our household and in our daily lives that even if my son outgrows his multiple food allergies, they're likely to stay a part of our regular purchasing habits for as long as they continue to hold high standards for safety.

Obviously, manufacturing practices change all the time.  Several foods and products that were once safe for us have had to move to new facilities, change ingredients, or are no longer made at all, so it's important to do your own due diligence regularly and make sure a product continues to be safe and check ingredients every single time.

Food products that we've discovered since my son's diagnosis (allergy to Wheat, Egg, Soy, Tree Nuts, Peanuts, Coconut.) that have become a staple for us include:

• Cup4Cup Multi Purpose Flour  the same wheat-free flour blend used in Thomas Keller's kitchens. You can use it cup for cup as a substitute for regular flour - hence its name.
• Tinkyada White Rice Spaghetti the texture is the closest I've found to wheat pastas, and unlike the brown rice or corn versions of wheat-free pastas, there's no lingering flavor to the pasta.
• California Foods Pizza Crusts we can make our own pizzas quick and easy - similar to flatbreads and you don't miss the wheat!
• Sensitive Sweets Everything well almost everything, sometimes they have lemon bars which carry a "contains egg" warning, but this is the only place I've found a wheat-free, egg-free, soy-free. nut-free bread that doesn't taste like cardboard.
• Just Mayo my son actually doesn't eat mayo of any kind, but I can't eat a sandwich without it.  This egg-free, soy-free, dairy-free, mayo alternative tastes just as good as the real thing and it doesn't upset my stomach the way Veganaise seems to do.  The only thing is that like many vegan substitutes, this contains pea protein, which is a legume, which may mean it will become obsolete for us if my son ends up testing positive for pea allergy.
• Enjoy Life Chocolate Chips my son actually has never had chocolate - he was 14 months old when he went to the hospital for anaphylaxis and since then new food introductions are done with caution.  Chocolate - while delicious - is a low priority food and he'll get around to tasting eventually, but for now these chocolate chips are ALL FOR ME.  It's how I make my hot chocolate during the holidays and what I put in my "muffins" when I'm making a batch of allergy safe muffins for O.  I think they taste even better than the chocolate chips I used to buy, and these are Top 8 allergy free!
• Kettle Brand Potato Chips everyone needs a junk food break now and then.  Their unsalted potato chips are one of O's favorites.
• Erewhorn Crispy Rice Cereal a basic cereal free of dairy, wheat, peanuts, and soy - and they say so right on the front of the box.
• Lundberg Family Farms Rice because wheat, rye, and barley in any form are out for us, we end up eating a lot more rice, rice flours, and rice cereals.  This can be worrisome because of the high levels of arsenic found in a lot of rice.  I do my best to try and make sure every product we use that contains rice is already testing for arsenic levels, but it can be tough to track down that information on top of manufacturing information.  This company is proactive about the levels of arsenic in their rice and tests regularly which makes me feel better about eating rice as often as we do. 

Non food items are just as important to us. Contact reactions are a real thing - in fact, we first suspected our son had a coconut allergy after we put coconut oil on his cradle cap (as advised by his pediatrician) only to discover his head was covered in open, weepy blisters the next day. That led to me investigating coconut derived ingredients and realizing there was a good chance we'd have to replace a lot of what we had been using around the house and in our bath products.

•  Real Purity Natural & Gentle Baby Shampoo was sort of a game changer for me. After I found this, I felt like I really could find products free of my son's allergens and with only seven ingredients I wondered why his old baby shampoos needed so many more ingredients.
• Allens Naturally we started with just the laundry detergent for my son's clothes.  Before we knew it, we were washing all of our things with this and buying several other cleaning products in their line including multi purpose cleaners and dish washing soaps.  It was formulated for people with multiple chemical sensitivities, and while each product's ingredient list is short and easy to read, they get the job done just as well - if not better - than the products we used before.  After a few washes with the laundry detergent, we were able to ditch fabric softener altogether and our clothes still came out soft and fluffy.
• Badger Baby Products especially their sunscreen and baby balm.  I even use it on myself!

I also love finding recipes that are by their very nature free of our allergens.  I'm used to subbing out as needed for old standby classics, but finding a recipe that is tried and true and requires no substitution is like gold to me.  The Pioneer Woman's Perfect Pot Roast and her Chunky Chicken Soup are Top 8 free and are in regular rotation in our home.  I quadruple Marcella Hazan's Tomato Marinara and store it in our freezer for quick meals, and this Cuban Fluffy White Rice gets made in our home almost every night of the week as an easy side dish.

A big honorable mention goes to Chipotle - the only place we're ever able to "cheat" and order takeout when we're with my son.  He doesn't really eat anything there beyond their chips and rice (everything else is still too "spicy" for his tastes) but Chipotle is huge among multiple food allergy families. Chipotle is clear about all their ingredients and provide a simple to read allergen chart.  I honestly had never eaten at a Chipotle until my son was diagnosed and now I am so grateful they exist.  Of course, there is always room for human error and last year's devastating series of food-borne illness outbreaks meant we didn't eat there for several months, but for our family, being able to cook a basic meal for my son without stressing about what we'll end up eating is nice on busy or difficult days and I trust that Chipotle is taking massive steps to make sure those kinds of outbreaks don't ever happen again.

It's possible some of these things will fall out of favor if they change practices or manufacturing, but for now I'm so glad they exist and helped make the adjustment to life with multiple food allergies a little easier.

Five Things I Want People To Understand About Food Allergies

1) No one knows why food allergies are on the rise.

There are many theories about what has spurred the rise in life-threatening food allergies - but there is no single answer. It can be frustrating to read about or to be told about all the things I should do or should have done to prevent my son's food allergies - especially from strangers who don't know the first thing about the lifestyle we led before my son's anaphylaxis.  If only I had introduced allergens earlier, introduced allergens later, breastfed longer, weaned earlier, took Vitamin D, took probiotics, avoided GMOs, c-sections, vaccines, antibiotics, pesticides, antibacterial hand wash, cleaned my house less, hand-washed my dishes, micromanaged my gut flora, fixed my leaky gut, did a coffee enema, ditched the Western diet, adjusted my Qi... the list goes on and on.

Personally, I'm sure all of these things have potential to have some kind of impact on the epidemic rise of life-threatening food allergies, but the simple fact is that there is no single answer and you, stranger, have no idea what my breastfeeding schedule or hand washing choices were before my son was diagnosed. Even among the food allergy community you'll find exceptions to every new theory that pops up - several families with identical twins that have one child with food allergies and one without raised on the same foods, schedules, environments and with no other notable differences. While it might seem like a good idea to tell a food allergy parent that you've figured out what their massive team of doctors, research, and network of food allergy families have yet to understand because you read a post the other day on Food Babe that says food allergies are caused by invisible shreds of toilet paper lingering in your water supply, here's a tip: keep it to yourself.  Odds are, that someone living with life threatening food allergies has been researching this beast from the day they were diagnosed and has already decided on the best course of action for their own family.  If you're really desperate to get in on the conversation, join a food allergy support group, listen to the stories of people in the thick of it and ask how you can help make the world a little safer for them.

2) There is no cure for food allergies...yet.

Epinephrine is not a cure for allergies or anaphylaxis but it's a crucial tool for a food allergic person to have in their arsenal. Epinephrine can often reverse the progression of anaphylaxis, but it must be administered quickly. Even in multiple doses it may not work 100% of the time if it is administered too late.  It is however the only lifeline someone experiencing anaphylaxis has, so it is vital that a person with serious food allergies carry epinephrine with them at all times.

Other things that are not a cure for food allergies: Benadryl/antihistamines, immunotherapy, diet changes, meditation, etc.  All of these things are or could be integral aspects of food allergy management that can allow a person with food allergies to better tolerate their allergens and survive in an allergy unfriendly world.  As it is right now, immunotherapy is a long term treatment that decreases sensitivity to food proteins and promises to give people with food allergies a fighting chance should ingestion accidentally occur, freedom to board a plane without fear of a reaction from airborne or trace particles, freedom to touch surfaces without worry. Still, being able to tolerate up to 15 peanuts without experiencing anaphylaxis is completely different from being cured of food allergies. There is no cure for food allergies, but the research happening now is robust. Hope is on the horizon.

3) Peanuts are not the only allergen that can kill.

Actually, any allergen has the potential to trigger life-threatening anaphylaxis. It is theorized that even people who are severely allergic to grass, could experience anaphylaxis if they absorbed too much of the allergen through a scrape in the skin or consumed it.  It's not exactly the peanuts that are deadly, it's the anaphylactic reaction that's deadly and a person who is allergic can experience an anaphylactic reaction to any allergen.  My son's anaphylaxis was triggered by wheat and egg. Anaphylaxis can be triggered by foods, biting or stinging insects, medications and latex and is occasionally reported after direct exposure to radiocontrast media and after exercise.  This is why its important to take every allergy seriously and if you've ever had a serious reaction to talk to your doctor about carrying epinephrine.

4) Food Allergies and Food Intolerance are not the same.

But they should both be taken seriously for different reasons. People should treat individuals requesting accommodation with food intolerances as seriously as individuals requesting accommodation with allergy.  Even if an intolerance is not life threatening the way an IgE mediated food allergy can be, an intolerance can harm someone's health and change their behavior.  

What may seem like semantics is an important distinction because they are fundamentally different conditions causing a different chain of reactions in the body, requiring different levels of scrutiny in food labeling and preparation, different treatment approaches, and different research for cures. I understand the word "allergy" gets the point across to the average person who won't take time to learn the difference, but without that immune system reaction, it's technically not an "allergy" and it's a disservice to use the terms interchangeably.  If you believe you have a food allergy or perhaps Oral Allergy Syndrome, contact a board certified allergist for testing to confirm which foods trigger a histamine release and could progress to more serious reactions requiring epinephrine. If there is no IgE mediated response, you may have a food intolerance that might also be helped with strict avoidance of the offending food, or in some cases be alleviated by certain kinds of enzyme supplementation.

Using food allergy and food intolerance interchangeably downplays the very real effect a food intolerance actually can have on a person, and it creates confusion when trying to educate the general public on the fact that food allergy can pose a severe and immediate threat to life.  If you have a food intolerance but call it an allergy and occasionally sneak a bite of food containing your allergens because "you'll just deal with the consequences later" or "a tiny bit won't hurt much" you contribute to the misconception that food allergies do not need to be taken seriously 100% of the time and you put the lives of food allergic people at risk.

5) Labeling laws are SO important.

People with food allergies rely on honest and complete disclosure on the ingredient panel of a food label to stay safe. While there is a legal requirement to disclose the Top 8 allergens in plain English, if you've got an allergy that's not covered by the Top 8, you've got to do a lot more legwork to make sure your food is safe to eat because your allergen might not have to be disclosed in plain English.  A mislabeled food item or a label that doesn't disclose the risk of cross contamination put lives at risk. It may seem like a hassle for a company to have to keep track of every potential allergen that could come into their factory, but when someone's life hangs in the balance, it's a small price to pay.  The number of voluntary recalls that happen because of allergen contaminated food can be terrifying and as a result, families with food allergies treasure the companies that make extra efforts to label clearly for allergens, reduce the risk of cross contamination, and provide clear information when an allergic individual or parent calls for manufacturing practice information. New laws are coming into place which will make allergen labels even more detailed and make companies more liable for good manufacturing practices which is definitely a step in the right direction.

Food Allergens... Where You Wouldn't Expect Them

Until you have to check every single label every single time you buy something, you can't really understand how sneaky allergens can be... creeping their way into things you never ever expected them to show up.   Ingredient lists CHANGE ALL THE TIME so no prepackaged food is ever safe 100% of the time and although we have brands we generally trust, I still have to check it several times and occasionally follow up with a brand's customer service to make sure manufacturing hasn't changed.  Anything with blanket descriptions like "Spices," "Natural Flavors", "Caramel Coloring" is a potential landmine and is usually avoided. 

The Kids with Food Allergies website has a great PDF file that explores some of the hidden allergens that a child might encounter during regular school projects that most folks without food allergies wouldn't think twice about.  They include potential allergens found in play-dough (wheat), glues (wheat), finger paint (wheat), tempera paint (egg), crayons (soy), potting soils (peanuts/soy) and several others.

Some ingredients are obvious: wheat in baked goods, egg in mayonnaise, soy in miso, peanuts in trail mix, etc. Others ingredients are far less obvious.  In the process of reading labels, I've started to discover what products contain allergens in places I might not have expected before.

WHEAT/BARLEY/RYE

Before my obsessive label reading, I didn't realize that these grains could commonly be found in:  

• Meatballs
• Soy Sauce
• Worcestershire sauce
• Fruit Snacks
• Licorice
• Imitation Crab Meat
• Malt Vinegar (I didn't even know what malt flavoring was before!)
• Brewer's Yeast
• French Fries
• Lip Balm
• Hair Gel
• Toothpaste
• Flouride
• Gel Polisher (at the dentist)
• Shampoo & Conditioner

EGG

I used to love eggs.  They were maybe my favorite food.  I even wrote a blog about my love for them many years ago. Even with my egg adoration, I didn't realize that egg is commonly found in:

• Pasta
• Ice Cream
• Sour Smarties
• Snickers, Three Musketeers, Milky Way Bars
• Processed Parmesan Cheeses
• Imitation Crab Meats
• Ranch Dressing/Blue Cheese Dressing/Thousand Island Dressing
• Breads (especially if they're gluten free - almost a 100% chance of there being egg in the mix)
• Crackers (and just like the gluten free breads - gluten free crackers almost always have egg or are made with tree nuts)
• Some versions of the flu shot and some anesthesia

SOY

Ug. Soy is a legume so maybe it should be included in my next category, but after thinking about how SOY IS IN EVERYTHING, I figured I'd give it it's own section.  I'm only half way joking about it being in everything... when I was on an elimination diet while nursing my son, soy was the most difficult allergen for me to avoid, which seemed so strange because before reading labels, I had always thought of soy as an Asian food ingredient.  Nope. Soy. Is. Everywhere.  Thankfully my son seems to be able to tolerate soy lecthin and highly refined soybean oil which are perhaps the most commonly found soy ingredients and makes things slightly easier for us. Many people with severe soy allergy are not so lucky.

• Baby Formula (along with coconut oil, soy was in almost every infant formula I researched when I was looking to supplement my dwindling milk supply after returning to work from my maternity leave. Twas the pits.)
• Candy (Pretty much every major chocolate bar has some form of soy.)
• Gum
• Vitamins
• Deli Meats
• Chips
• Pretzels 
• Waffles
• Hair gel
• Shampoo & Conditioner
• Hair spray
• Toothpaste

TREE NUTS, PEANUTS & LEGUMES

Most people know by now that peanuts are not nuts.  Peanuts are legumes like soybeans, lentils, chickpeas and green beans. Vanilla bean, cocoa bean, and coffee bean... despite the use of the word bean, are not legumes.  Coconut (which my son is also allergic to) is not a tree nut or a legume, but is thankfully included in the FDAs allergen label laws. Pink peppercorn is not a peppercorn, but a dried fruit from a plant in the cashew family, and can pose problems for people with tree nut allergies. 

So what I'm trying to say is that these three categories are just a cluster of allergy madness.  Some people are allergic to only a single type of tree nut, some are only allergic to peanuts and can eat all other legumes and have no problems with tree nuts, some have to avoid both tree nuts and peanuts but have no problem with legumes, and others can not eat any tree nuts, peanuts, or legumes, and some are only allergic to one single type of legume and can eat peanuts or tree nuts without issue. Currently our son is in the no tree nuts, no peanuts, and no legumes camp.  I wasn't expecting to see these guys show up in:

• Non-dairy cheeses and milks
• Gum
• Plain Cream Cheese (certain food-gums are derived from legumes)
• Curry
• Mole Sauce
• Pesto (clearly I had never attempted to make my own - pine nuts are a key ingredient in pesto)
• Potting soil 
• Some prescription eczema treatments
• Bird food
• Ant bait
• Dog treats
• Soaps

(Although coconut is not a legume or tree nut, I want to add a note here - good luck finding laundry, bath, or body products that contain no coconut or coconut derivatives. It's VERY hard and the products we've found seem to be anomalies on the market, so should they ever change formulas, we'd be stewed - if you need recommendations for coconut-allergy friendly products, message me on Facebook or leave me a comment here and I'm happy to share our list of safe items. Oh, and a baby formula made in the USA that doesn't contain coconut oil? Maybe there's something out there now, but when I was looking a few years ago, I had to import a German formula through the UK to get one without coconut oil because even the prescription formulas my pediatrician wanted us to try ended up having coconut oil in the formulations.)

Lastly, my son is not allergic to the following, but they are in the Top 8 allergens here in the US, and we've accommodated friends with these allergies, so I always try to keep my eyes peeled.

MILK

• Non-Dairy Creamer (wtf, right?)
• Deli Meats
• Medication and some dental applications
• Toothpaste

FISH/SHELLFISH

• Milk (yep - fish oil added to milk... for that extra DHA)
• Marshmallows

Clearly this is in no way any sort of comprehensive list, and I'm not sure one exists, but it just goes to show how easily those sneaky allergens work their way into an ingredient list and why a person with a food allergy will want to check the label of anything they eat before they decide to eat.

The Silver Linings of Multiple Food Allergies

It is SO easy to wallow in despair when you're living with multiple life-threatening food allergies. There is a lot of anxiety that goes hand in hand with the vigilance required to keep a child safe from the dangerous crumbs lingering around every corner.  Every parent of a child with life-threatening food allergies has shed plenty of tears over their child's diagnosis before picking themselves back up, dusting off, and plowing forward like a superhero.  You start to focus on the silver linings of every food-allergy cloud which can keep the food allergy blues at bay for a while.  These are ours:

1)  WE EAT HEALTHIER

This one is probably at the top of every food-allergy family's list.  Filtering out unsafely processed foods is a must when you've got food allergies. Well before my son was even conceived, my husband and I had been pretty good about the foods that came into our home.  We didn't buy sodas or candy, and the foods we purchased were locally grown, fair trade, humanely raised, and organic whenever possible.  We were, however, much less strict when it came to eating out, and while we made extra efforts to regularly patronize local restaurants that did offer organic, local, ethical, and humane dining fare, we were willing to turn a blind eye when we went out for authentic Dim Sum, or street tacos, or whatever hot spot of the moment, and we wouldn't ask about where they sourced their proteins.

We still maintain the same standards for the food we eat at home, only now there's only a handful of safe pre-made foods in our freezer (and since we can't eat fast food, we cherish these 5 freezer foods like the precious things they are! They're the only way we can catch a break from cooking from scratch every day.)  Since my husband and I don't eat out at restaurants with my son, that means we don't eat out unless we've got child care, which means... we rarely eat out.  The restrictions at home and the reduction in dining out combine to make us healthier overall.  In fact, I've lost almost 20 pounds since my son's diagnosis and that's the only modification that's been made.

2) I'VE TRULY LEARNED HOW TO COOK AND BAKE

Before my son's diagnosis, I wasn't much of a cook.  I had the basics (pretty much whatever Alton Brown taught me while watching Good Eats) but many of the recipes in my arsenal featured canned soups, premade flavor mixes, boxed mixes, or convenience food shortcuts.  I was good at assembly.

All shortcuts are off the table with food allergies. Anything that is processed in a factory, or manufactured on a production line means I've got to make sure there's no chance of cross contamination with O's allergens.  Cooking everything from scratch used to seem intimidating, but now it really is much less stressful and it gives me back a little bit of control. 

I now know how every element tastes and how I might be able to replicate all our old favorites.  I'm no longer intimidated by cooking food the way our great grandparents did.   I've made entire Thanksgiving and Christmas dinners for eight from scratch (including ice cream!), become a pro with cassava and corn flours to replicate my Colombian mother's bunuelo, arepa, and empanada recipes... I even figured out how to make a killer nacho cheese sauce so we could have chips and dip on Superbowl Sunday.  Considering how much I resisted cooking in the past, I'm pretty proud of myself for coming this far and I'm grateful that I've been able to learn.

3) NON-FOOD TREATS!

When I was a kid, candy was the ultimate in reward.  To me, nothing said "great job" like a Three Musketeers bar (weird childhood side note: I used to eat all the chocolate off first and then roll the nougat fluff into a large ball that I'd eat like an apple.)  Safe candy can be hard to come by in the food allergy world, but there are still plenty of allergy friendly sweet treats if you do some homework and plan ahead.

What's ten times easier to find in stores and never spoils in your diaper bag? Non-food treats!  Did you know Hot Wheels are 99 cents at Target?  Do you know how long my two-and-a-half year old is willing to patiently wait through a shopping trip with the promise of a brand new Hot Wheels at the end?  A VERY LONG TIME.  We participated in the Teal Pumpkin Project last year and ran out of our non-food treats before the end of the night and unexpectedly had left over candy that's still sitting in our pantry getting stale.

I only recently realized that I associated food with reward when I was growing up - we went out to dinner to celebrate good report cards, picked up ice cream after acing tests, got a candy bar for working really hard on something.  Even as an adult, I struggle to break the habit of rewarding myself with a food treat when I've worked a long day or when I've been stressed out.  My kid still has fruit snacks (they're basically candy) and cookies more than I'd like him to in theory, but he doesn't consider those things rewards.

4) WE DON'T GET SICK AS OFTEN

It's scary to come down with a common virus when you have food allergies (and worse when you have asthma which frequently goes hand in hand with food allergies and eczema) because many allergic reactions can mimic viral symptoms.  When our kid gets sick, there's always a lot of anxiety as we're trying to decide if the sudden rash, or coughing, or runny nose, or upset stomach is viral, or the start of an allergic reaction that might require use of epinephrine.

Thankfully constant hand washing, surface wiping, hand and face wiping, and the phrase "hands out of your mouth!" keep him safe from both allergen exposure and disease carrying-germ exposure.  Hand washing is the best way to prevent the spread of disease and if everyone got into the habit of hand washing before and after eating, it would also help keep children with food allergies safe.

5) COMPASSION COMES EASY

Food allergies are an invisible illness most of the time.  Unless you know me personally, you don't know what we cope with on a daily basis to get through the day safe and sound.  I know how amazing it feels to have friends or family go out of their way to help you out, and I also know what it feels like to have a someone look at you with a smirk when you tell them your kid can't eat something because he has a food allergy.

I'm somewhat ashamed to admit it now, but there was a time when I thought I knew it all.  If someone had a Disabled Person Placard and seemed to strut into a store without a problem, or if someone used a motorized scooter at a store without a cast on their foot, or even if someone used a family restroom when they didn't have a baby, my judgey-judge meters would have gone through the roof.  Now, I know better.  I have no idea what other people are struggling with on a day to day basis or why they are grateful to be able to use the accommodations available to people with disabilities. No one benefits from my judgement or approval and I'm happy to make whatever accommodations we can to make someone else feel comfortable and included - and I'll do it with a smile.

6) WE HAVE BEEN BLESSED WITH INCREDIBLE FRIENDS AND FAMILY

We have a friend who has made her non-allergic children's birthday parties totally accessible to us.  She even buys her kid's cakes and cookies (including her daughters first smash cake) from the dedicated Top-8 allergen free bakery that we buy our treats from.  She reads the labels on every snack she puts out for the kids to make sure my son's allergens are not an ingredient, and she plans her children's birthday parties between lunch time and dinner so that food is not a major player in the fun. Even if O doesn't eat many of the snacks, it means that he can play with or near other kids who are eating snacks and not worry about what they've just been eating.  We never asked her to do this, and every time we remind her that she doesn't have to worry about us, but that we're grateful for her thoughtfulness.  Every time (it's now been 3 birthday parties) we show up and are just overwhelmed by how far she's been willing to go to make us feel included and at ease.  We are so blessed.

We moved into my parents' home while we remodeled and put our home on the market. We talked to them about making their house allergen-free.  It's been a few months in and things haven't been perfect, but they let me go through their refrigerator, freezer, and pantry and throw out the things that were not safe for O so I could replace them with a safe substitute and they let me have total control of the grocery shopping while we're living with them.  Having once eaten eggs, lentils, barley, wheat, peanut butter, and almond milk on the regular - they gave it all up so our shared home would be safer for all of us to relax in.   We are so blessed.

No matter how many random people downplay the seriousness of our son's food allergies, we know we've got incredible people in our circle of friends and family that take things as seriously as we do and we are so grateful for them.

Navigating a Social Life with Food Allergies

As I mentioned in my post yesterday, things have changed significantly since my son's food allergy diagnosis.  Having a child alters your social life anyway, but having a child with multiple life-threatening food allergies requires a bit of extra effort and planning on our part (and sometimes on the part of our friends and family) to make sure O is included.  

Many times the safest course of action is to simply turn down invitations to activities that are inherently difficult for us to manage (restaurants, food festivals, carnivals, etc.) In general, think of all the fun stuff you do that revolves around food and assume that unless we've got about a month of lead time to arrange for child care with someone who is trained on O's allergy care and management in our allergen free home, we'll have to politely decline the invitation.

Anyway, here's what we do for the situations that make us leave the safe haven of our home:

Everyday 

Any activity that requires that we leave the house also requires some planning.  Toddlers don't need as much in a diaper bag as babies, but at two-and-a-half, I still carry a fully loaded bag everywhere we go.  It has the basic kid supplies, but it also carries his epinephrine allergy kit, wipes for all surfaces he'll put his hands on, and a full day's worth of snacks.  He might not eat a full day's worth of snacks in one outing, but we don't have the option of eating out if I can't get us home in time for lunch or dinner and if he suddenly decides he's starving, I can't pick up a safe meal for him anywhere. My bag is full of his safe snacks, just in case we end up delayed, lost, stuck in traffic, or lose track of time when we're having fun.

Most Days

Any activity that will have us out of the house during lunch or dinner time means that I've got to pack us all a lunch to eat out. You can see some of the lunches we've packed on my Instagram.  Depending on how long we'll be out, if I'll have access to a microwave, or if I'll be able to refrigerate our food will determine what I can pack.  If we're planning a full day out or to different stops, then I pack us all a lunch and dinner to-go and try to pack things I know taste good at room temperature and don't spoil easily.  If we're doing someplace fun like Disneyland (which is considered an allergy haven for many people thanks to their recent efforts to be inclusive of food allergy families), I pack double the amount of hand wipes and I'm also sure to pack some cookies or a cupcake from Sensitive Sweets so we can have a special treat too.

I avoid my son's allergens when I'm with him.  Part of it is so he doesn't feel like he's missing out on anything, but the bigger reason is that it's easier for me to manage his risk of contact if I'm not eating his allergens either.  If I eat his allergens while he's around, I need to wash my hands and mouth before I can touch him and I need to make sure there are no crumbs left on me anywhere. (Even then, I still worry about trace amounts that may be on my clothes. On those rare days when I eat out without him, the first thing I do when I come home is wash up and change out of my clothes.)   If I skip out on his allergens when we're together it's easier to manage a toddler that might need my help with feeding himself or picking himself up after a tumble.  Plus, this way I'm always open to the spontaneous toddler cuddle when he feels like giving me a big fat gooey kiss right on the lips.

Holidays

The stress of the holidays is magnified for food-allergy families because of how much food goes hand in hand with every major holiday - Valentine's Day candies, Easter egg hunts, Independence Day barbecues, Halloween trick-or-treating, Thanksgiving... well... everything, and Christmas.  

That said, we don't see a lot of our big extended family any other time of the year except for these big holiday gatherings so we make an effort to show up and see everyone.  Sometimes we'll pack our own meal to eat, and other times we'll eat before hand and just show up to say hi to family.  Even showing up without eating can be nerve wracking as kids go running around eating bread sticks, or trail mix with nuts, or eating scrambled eggs before scrambling to hunt eggs filled with mini Snickers bars.  Most times we camp out in a corner and my husband and I take turns watching the kiddo like a hawk while the other makes the social rounds.

I've also managed to modify many of our family's holiday favorite meals into allergy safe versions. We have our own 100% allergy friendly celebration at home and everyone eats the same food.  It's a lot of work making everything from scratch on your own, but it's 100% worth it.

Special Occasions

Birthday parties, weddings, and other special occasions are another case-by-case situation.  If we can arrange for child care, then O will stay home.  It's safer for him and less stressful for us.  It's sad that he misses out, but it's also not worth the risks.  If it's a child-centered event where it only makes sense for us to go if O is going, then we pack our food and go.  If it's not at someone's house, I'll call ahead and ask about their food policies.  If it's at someone's house, I'll ask them what they have in mind for the menu and plan to pack the same things plus a cupcake or cookie so we don't stick out too much eating our own packed foods. Some friends and family have taken great steps to make sure entire parties are safe for O to be around... I can't even explain how truly and deeply grateful we are for that.  It's not something we've ever asked for, but to be able to let O run around with other kids knowing that the snacks they were just served are free of his allergens is such a huge relief.  For a moment, someone else shares that burden with us and the weight of our responsibilities seems easier to carry for weeks after. 

Vacations

We do go on vacation!  Even though we're not comfortable flying with O's allergies right now, we hope that we will be when he is older and has a better understanding of what a reaction is.  Camping or remote destinations are also off the table until he's a little older. Before we go on vacation, we locate the nearest 24 hour pharmacy and Emergency Room closest to our hotel. We program those into our GPS and phones. We ask our allergist to give us a paper copy of our epinephrine prescriptions so in case our epi-pens are damaged by heat or lost, we can get a prescription filled on site without a hassle.  We use a Google Spreadsheet to plan ahead and I make a list of every meal I'll need to cook and try to guess on what we'll want for snacks. We locate the nearest Whole Foods or Mother's Market and put a shopping trip on our itinerary.  We still pack about half our food to take with us, since the nature of specialty allergy-safe foods is that it might not be carried at all locations.  Anything we're relying on eating, we pack.  We pack our own condiments, spices, oils and cooking utensils/pans.  

If we can get accommodations with a kitchen, sky's the limit.  If our accommodations don't have a kitchen, I bring a Cool-A-Tron mini fridge and a cooler with dry ice (for freezer foods), and plan out a series of microwaveable meals.  Either way, once we're in the room, we wipe down every surface and check under every bed, table, and nook and cranny to make sure the cleaning staff didn't miss a potential allergen (we usually find something! a cashew under a sofa, a candy wrapper under a bed - so we can't miss this step!) I call ahead and tell the hotel we've got severe food allergies, and they put a microwave on hold for us that I clean once we're in the hotel. This year I may also consider a toaster oven or an electric skillet for cooking, but still need to do some research on what is the safest to use in a hotel room for cooking. The photo of our family's bentos above was actually a meal I cooked during our last vacation for us to eat while we were visiting the zoo. We've even done group vacations with the strict rule that there is no outside food allowed in our room, but everyone is welcome to enjoy the food we've packed and cooked. We make it work!

Spontaneous Outings

Bahahahahahahahahahahahhahahahahahahah. No.  Besides, spontaneity is overrated (my post-food allergy mantra.) 

SO, if it seems like we never go out anymore and we turn down your invitations to do rad things all the time...you're probably somewhat right.  I assume that if you're asking us to hang out with you, it's probably because you like us and we like you, so I have a feeling you already understand why it's tough for us to be at a lot of events.  Please keep inviting us, we'll say no when it just doesn't seem safe for us, but we miss you and when the stars align just right, we'll jump at the opportunity for all three of us to get out and play.

Food Allergy Awareness Week - React with Respect

Today marks the start of Food Allergy Awareness Week, and this year's focus is on encouraging individuals without food allergies to react with respect when someone tells them they have a food allergy.  Now, for most people I know, reacting to food allergies with respect and compassion seems like a no-brainer, but you only need to spend a few seconds in the comment section of any food allergy related post to get a taste of what kind of mean spirited things are said to or about people with food allergies.

With that in mind, my goal for this Food Allergy Awareness Week is to write about what it's like to raise a child with multiple life-threatening food allergies.  Hopefully one of my posts will reach someone who might think twice before saying or doing something inadvertently hurtful to someone with a food allergy or to the parent of a child with food allergies in the future.  I realize that people who say or do things like that often don't fully understand how serious food allergies can be and may not necessarily be acting from any sort of malicious place, but even with the best intentions, the wrong move may inadvertently put the lives of food-allergic people in danger.

My son is now two and a half and is allergic to five out of the "Top 8" allergens and more. I remember walking out of the hospital after my son's experience with anaphylaxis and seeing the outside world in a completely different light.  I was terrified.  It was like being asked to let my son grow up in a field of land mines - just one accidental step in the wrong direction could be disastrous. 

I knew how I could keep my child safe from "tricky people" from bullies, from car accidents, from drowning, but I had no idea how to keep my child safe from anaphylaxis.  This was galaxies beyond what I had imagined I needed to prepare my 14 month old son for.  As the diagnosis came in and we learned that wheat and egg had likely triggered his anaphylaxis, and that further testing showed he was also allergic to barley, rye, soy, tree nuts, peanuts, and coconut. I started to fall apart mentally. I knew peanut allergy could be deadly, but death by wheat seemed so outrageous.

I had wanted to be a relaxed parent who would give my child all the tools he needed to stay safe so I could let my kid explore the world and get his fingers dirty on his own.  Oh, he just ate a handful of dirt? Cool. Live and learn.  I wanted to continue traveling the world with him the way my husband and I did before he was born. I planned on us traveling overseas to meet my family, and to show him all my favorite places on the planet.  Planes will be out of our reach until he is old enough to tell us about the start of any allergic reactions. I wanted him to experience a world of foodie flavors with us and eat at all the new restaurants that pop up in our food-fanatical city.  We don't eat out with him anymore and we won't eat out with him again until there's a cure.

Before my son's anaphylaxis, my husband and I went out to dinner regularly and took him along with us.  When he was nursing, it wasn't a problem. As he started solids, we'd order items off the menu for him that I wouldn't normally cook at home and he'd happily chow down - a very well behaved baby in all kinds of restaurants. He'd usually come home with a mystery rash or his eczema would flare up days later.  At 8 months old, we went to a pizza place for a birthday party.  He didn't eat anything there, but wound up with a splotchy rash on his face from friends who had held him or kissed him after eating pizza. We didn't know about contact reactions then. We had no idea that these things could be food allergy symptoms and I had no understanding of the concept of cross contact.  We didn't put two and two together until after his diagnosis and then the guilt poured in.

I look back at photos of him at four months old, eczema on his face, hands wrapped in sleeves so he wouldn't scratch himself raw - why didn't I think to eliminate allergens earlier?  I was on an elimination diet while nursing him, but I didn't know how thorough my elimination needed to be until later. Besides, our pediatrician at the time, and his dermatologist were pretty positive his rashes were not food allergy related and that they were just a thing that happens to babies and that my elimination diet probably wouldn't help things clear up.  They were wrong. And it turns out, many physicians are sorely under-educated on the realities of food allergies.

As the months passed and we got better at doing the allergy thing, I'd settle into a zone and feel like I'd have control of things pretty well and that we had found our new normal. I felt like I didn't miss the old normal.  This was fine.  We could do this and everything would be awesome despite food allergies. Then something.  Something minor.  Something that most people don't even notice would snap me out of my positive attitude and remind me that our normal was not everyone else's normal and things would not be normal for a very long time... if ever.

I remember being at Costco and having a breakdown as I realized all the food that was in everyone's hands, being passed out, dropped on the floor, spilled on shopping carts, could kill my one year old. It was as if I was watching madness happen in slow motion, people frivolously playing with some kind of biological weapon.  Of course it wasn't a biological weapon to any of them, but all I could see was the threat all around me.  I watched parents feed their children free samples without even a second thought as to what was in them and I wondered if they were ever afraid of the food they put in their kid's mouths. Before food allergies, I had never given it a second thought.

I remember sitting at In-N-Out and watching a child younger than my son being fed french fries and a burger and becoming so sad that my son wouldn't experience In-N-Out. I wondered why that made me sad. I had never planned to feed my kid fast food and I rarely eat it myself, but crossing that off my son's "firsts" list put a cloud over my day.

I remember being at Gymboree where a friendly mother handed out cookies to all the excited children in the lobby while I scrambled to get my son's shoes on and run out of there before there were crumbs everywhere and my kid was asking me why he couldn't have a cookie too.

A fruit snack brand we trusted changed their ingredients to include wheat starch as the very last ingredient.  One more treat we crossed off our very short list.  A few weeks later, a freeze dried fruit company we had been purchasing from since O's first solids changed manufacturing facilities and now was processed in a plant that also processed wheat and other allergens.  Another snack off our list.

Little things.

As my son gets older, his allergies have not improved and we're getting him tested for three more foods that he's had unexpected reactions to in the last year.  We get closer and closer to the age where he's going to school and I'm terrified.  I have to trust another person to know his allergies. To keep him safe. To check labels. To consider ingredients in non-food things like glue, finger paints, play-dough, and water colors. Trust young children to not intentionally or unintentionally expose my son to the foods that will hurt him or could cost him his life. I can barely keep up, so I don't know how I'm supposed to let people who aren't completely obsessed with him do it.  We've talked about homeschooling... at least until he can self-administer his epinephrine, read labels himself, and say no to candy and cupcakes when they show up at school unexpectedly and everyone else is eating them. 

I'd make a terrible home school teacher.

I don't want my son to be the "special little snowflake" everyone assumes that food-allergy parents want their kids to be.  I want him to shovel food without a care down his adorable little gullet like the average kid and to never be singled out for something he can't eat or touch without the risk of dying. I want a cure in his lifetime.

Things have changed so drastically from the way I imagined parenthood, but I know more than ever that the best way to make the Universe laugh hysterically in your face is to have expectations and plans for your life.  I've also learned perspective.  Everyone is fighting a battle we don't see on the outside and for every parent that has it easier than me, there's a parent that has things twice as hard. We all do what we have to do.

We're getting better and better at managing the allergy thing, but we face challenges every day. I try not to complain much about our life with food allergies, but it was and still is a difficult adjustment that's worth every hurdle. This Food Allergy Awareness Week, I hope to share how much our every day lives have changed to keep our son safe and encourage everyone to react to food allergies with respect and compassion.