Blog

Dec. 2014
Entry by Bridget
For our holiday preparations for our recent flight across the US via United I decided to put in some initial legwork for my allergy girl.  I contacted United and was connected with the disability department.  The gentleman gave us seats that would be strategically located farther away from people to keep the chances of nuts in our "shared air" down. He assured me that no nuts were served on the flight at all. He suggested I board the plane when they announce early boarding for people with disabilities. I felt so comforted after my conversation with him!  We haven't flown with our girl in a year and a half and my anxiety about flying with her has slightly increased due to my ever-increasing knowledge of food allergies. 

We got to the airport with our game plan.  I notified the woman at the gate that I needed to board early to wipe down my daughter's seat due to food allergies.  We had a good conversation and shortly after I was paged to the gate.  Apparently they had discussed the prediciment of my family and the flight attendant let me know that nuts were served in first class - directly in front of our chosen seats.  So...we moved seats.  The gate agents told me to let the flight attendants know.  When I boarded the plane early to wipe down her seat, the flight attendants told me that they actually sell nuts to all the people in the main cabin.  So much for a nut-free flight.  

In flight, shortly before serving the main cabin, a flight attendant apprached me and asked what they should do to keep my daughter safe.  I asked if they could make an announcement and even gave her some suggested wording that I had heard other flight attendants use.  To my surprise they did even more than that.  They announced her allergies and said that they would not be offering for sale one of the snack boxes with trail mix so as to not create a medical emergency.  Whew!

Flight 1 down.

Flight 2, also with United.  

We barely made this flight.  We were some of the last people to board the flight and so my husband had to do a slap-dash wipedown of our daughter's seat. While he did that I let the flight attendants know.  The woman who I spoke with said "we aren't allowed to do announcements about nut allergies anymore." Really???  My feelings were, "I bet they would be willing to announce that they were going to have to make an emergency landing because my daughter was going into anaphylactic shock."  Argh!!

I posted a quick blurb on my FB page out of frustration.  My wonderful allergy friends called BS and offered prayers, news articles and shared frustration.  

While in flight, an attendant approached me and let me know that she would be telling the rows around us to not eat nuts.  She also said that they wouldn't be offering for sale the snack packs with nuts in them to the rows around us.  WHEW!

I was so pleased by how things worked out, but I do feel that if people only knew how anxiety-inducing it is to fly with a child that has food allergies and then to be initially met with resistance, they would start these conversations being more accommodating or sympathetic at least.  

My takeaway: Call the airline ahead of time (even though they may not give you good information), and then talk to the gate agent and talk to the flight attendants about your childs food allergies.  And talk and talk and talk to anyone and everyone who will listen.  We are an army of moms and dads fighting for our children's safety.

Oct. 2014
Entry by Bridget
A question that I get asked often regarding my shirts is "Why don't you have the shirts say what the child is actually allergic to?"  In the beginning I wanted the shirts to list what the child wearing it was actually allergic to until it occurred to me, this is a daunting task.  I was meeting more parents with kids that had food allergies and they were saying things like "she is allergic to pineapple, tomatoes, peanuts and wheat," "he is allergic to rice, gluten, soy, and milk," "he is allergic to milk," and so on.  It was going to be crazy to list all the items a child was allergic to and then be able to make multiple shirts with those same allergens.  I chewed on this for a while and then it dawned on me after yet another incident where someone tried to offer my child a muffin "because it doesn't have nuts or eggs in it"...uh, "yes it does, it likely has eggs and even if it doesn't have nuts it was likely made near or around nuts."  I realized many people have become so disassociated with food and making things from scratch they may have even forgotten what ingredients are required to make something.  It occurred to me, what if we don't actually list the allergen but instead just identify the child as being allergic to food, would that slow people down and make them talk to a parent or the child before offering them food?  I made the shirts and tested them.  It worked!!!  People read my daughters shirt and MORE IMPORTANTLY they didn't give her food, conversations occurred, she was given the opportunity to tell people what she was allergic to and I was given the opportunity to talk her food allergies with people as well and educate them in the hopes that they will be more mindful to possibly someone elses child that suffers from food allergies.  






Oct. 2014
Entry by Bridget
My son is actively involved in gymnastics.  Multiple days a week for several hours.  My daughter and I usually go with a stack of books and activities and hang.  I love watching my son but it is difficult to try to entertain my daughter because she doesn't share my love of watching her brother.  The current set up for observers isn't that great, a couple of rows of chairs and recently they added a picnic table.  Kids sometimes sit at the picnic table to color or read.  Yesterday my daughter started a swimming class that is at the same time as her brother's gymnastics class so we missed all but fifteen minutes of his gymnastics class.  When I got home last night I got this text from a good gymnastics friend of mine that I hadn't caught earlier: "...Wanted to let you know that if you are headed [to the gym] to pick up [the boy], there was a boy sitting at the black table (viewing are) eating pistachios.  The shells were in a pile on the table while I was there."  I let her know we didn't go near the table but thank you so much for the heads up to which she responded "Glad it worked out okay!  I got so worried when I saw it and wanted to go get some bleach or something to clean off the table."  I LOVE my friends!!  It is so amazing to have people watching your back. 

Oct. 2014
Entry by Bridget
I was inspired after reading a great article about having children with anaphylactic level egg allergies get the flu shot (read it here: www.slate.com/articles/health_and_science/medical_examiner/2014/01/flu_vaccine_is_safe_for_people_with_egg_allergies_why_i_vaccinated_my_child.html).  I was inspired by the article to shake off my nerves and make some calls.  My daughter's egg allergies are definitely severe and we have avoided giving her the flu shot since she was two.  Last December my whole family got Influenza strand A (plus my in-laws) and we were quickly reminded about the value of getting the shot.  I was down for the count the longest (16 days before I finally kicked it completely).  My daughter and son both lost about four days, my husband was the only family member that got the flu shot and he had mild symptoms that didn't last that long.  For my daughter having to accompany me to the Dr. and having to receive "special" treatment, as in we were escorted to an unused part of our Dr.'s office, given masks to wear and then the nurse came into the office wearing a mask, well, she didn't like that at all!  So I got really excited at the thought of giving my daughter the flu shot (which also reminded me that my whole family needed to get the shot as well).  I called my daughters allergist and talked to the nurse.  Her response was "we've been telling people that have kids with egg allergies to get the flu shot for years, I don't understand the article you read, this isn't new news."  I told her it was my understanding that my daughter should get the shot in the allergists office and then wait a half hour for observation.  She said she would talk to the Dr. and call me back.  She called back to report that they don't give flu shots in his office and that my Pediatrician could do it and "she won't need to wait for a half hour after."  Oooookay.

This morning my daugher had her well-check and I thought "great...kill two birds."  I asked oru Pediatrician if she could give my daughter the flu shot and told her about the study.  Her response was "definitely NO, I don't need anymore grey hair."  I explained that I had called my daughters allergist and he said he doesn't do flu shots but he suggested that our Pediatrician would be fine handling it.  She responded "I am not touching her with a ten foot pole.  Was he aware of which of his patients he was talking about?!  I don't think he realized that he was talking about an anaphylactic egg patient."  She said "we have a crash cart here and some epinepherine but I am not going to do this."  She promised me she would call our allergist and talk to him.  As it turned out I had to return to the same office later in the day for my son who has Strep.  Our Pediatrician said that she used her lunch to look up the research and it said that it should be done by an allergist in their office and she should be observed for a half hour after.  The allergist is off on Fridays so she promised she would call back on Monday and talk to him.  

If it can be safely done I JUST WANT THE SHOT!  The "real" flu is HORRIBLE and I support anything that avoids HORRIBLE if at all possible.  

Here's hoping for some good news next week!

 
Entry by Sarah at www.dontfeedmymonkeys.com
September 2014

Another Mom Dealing With Food Allergies
I have four kiddos, two with life-threatening food allergies.  My son (Bubs) is allergic to milk, eggs, and peanuts. My daughter (GirlyGirl) is allergic to peanuts.  I have two younger daughters who do not have any food allergies (Cutie and Curls).  I blog to share our stories, connect with other families, and to educate and advocate for people with food allergies. 

We have known about Bubs' food allergies since he was very young, but more recently we discovered he has food sensitivities as well.  In all he avoids milk, eggs, peanuts, tree nuts (unless labeled as dedicated peanut-free), gluten, soy, and artificial colors.

We learned about GirlyGirl's peanut allergy when she was in preschool, and more recently we have decided to eliminate milk from her diet as well as artificial colors.  

We do our best to go about life in as normal a fashion as possible when living with food allergies.  The kids participate in activities, go on vacations, and attend public school. They play at friends' houses, go to birthday parties, and live outside of my safety bubble.  It is important to live life without letting food allergies get in your way.  We have struggles and hurdles, successes and support.  I use this blog as an outlet to share our experiences.  I would love to hear yours as well. 

Entry by Bridget
August 2014
Annual Trip To The Allergist.
About two weeks ago we headed back to the allergist for our annual visit.  Actually we were about five months late for our annual visit, oops.  I wasn’t really excited to go back knowing that likely nothing had changed.  There isn’t really a lot of incentive to go to an appointment where you already know the outcome.  My daughter has continued to be sensitive to all the same things. 

At the end of 2013 I had to take her in to the allergist to get tested for Asthma.  She had had a cough and when I sat down and counted the weeks I realized she had been coughing for six weeks!  We were confident the Asthma diagnosis was coming as her allergist put it “it’s a question of ‘when’ not ‘if’.”  Her test showed her large lung function was in the low to mid 70’s and her small lung function was less than 50.  We started her on an inhaled steroid but unfortunately it didn’t seem to work.  We then had to put her on a liquid steroid….wow, that stuff is potent.  It turned our little five-year-old into a raging teenager (or so we have been told) with crazy mood swings. After several days on the liquid steroid we were able to take her off and her cough subsided.  Now fast forward to a few weeks ago, the end of July, a return trip to the allergist and another breathing test, just to see what was happening.  She wasn’t sick, had no signs of low energy (or so I thought) and her test scores showed slightly lower than they had been when she was sick at the end of last year!  How can that happen?!  Our allergist said he’s learned to not look at his patients and decide whether to give the test or not but rather to run the test on all his patients.  He said that she looked fine, I thought so to.  The verdict – daily maintenance of an inhaled steroid.  “That may explain,” said our allergist, “why you have an almost six year old that still needs regular naps,” or possibly other behaviors that we had thought were just part of who she was.  In addition to that little nugget we were also told she is allergic to cats, and of course we have one.  And of course that cat loves our daughter.  She prefers our daughter’s room to anyone else’s room.  I feel so bad for my daughter who currently dreams of being a vet.  She can’t seem to be around dog saliva – likely due to the egg in dog food, now she can’t be around cats and we are pretty confident that you can add horses to that list.  Our poor girl seems to have gotten the short end of the stick. 

Entry by Trish L. -
May 2014
I am a mom to the most wonderful, sweet, handsome, intelligent little boy!  You might be a mom or dad to one of those, too. What I never guessed I'd be is a mom to a boy who is allergic to some of the most common ingredients in the American diet. This is our journey with food allergies so far. I had a totally normal pregnancy, and gave very routine birth to a healthy little boy. He was a champion nurser from the start, and I delightedly exclusively breastfed him until six months, when we started solids while I continued to nurse him. Around eight weeks, that sweet little baby skin turned raw, red and itchy. He began having reflux symptoms. His full head of hair started coming out in chunks of greasy cradle cap, and he was left with a mohawk of hair glued down by yellow, scally patches.  My husband had a dairy allergy until age 5, so that was the first thing I cut from our diet. But my son's skin symptoms did not improve, although the reflux seemed to lessen. I chalked it up to the dry winter weather and a delicate tummy, slathered on the ointments, and stayed away from dairy as a precaution. Finally, at six months, he started vomiting, just once a week, but randomly. He would appear miserable while it was happening, and sleep hard for several hours after. The next day he would be perfectly fine, back to normal. At first we thought it was a virus, but after the third week of random vomiting, the pediatrician and I were quite sure it was not viral, and she suggested a blood test for allergies. I had been absolutely unable to tie his vomiting to anything I was eating, and no wonder - he was allergic to SO many things. She cautioned me that the results would be inaccurate given his young age, but might give us clues as to how to stop the vomiting.  When the test came back with EIGHT different food allergies plus a host of milder, environmental allergens I was stunned. The wheat and peanut allergies were most severe and required us to carry an epi-pen.  Not as severe but still worrying were dairy, egg, soy and corn.  beef and pork allergies were mild. I cut everything from my diet, trying to limit his suffering, and he never vomited again until he had his first real stomach virus at 15 months.  Now he is under the care of an allergist, and we are working to develop tolerance to small amounts of dairy, as a start.  There's hope that he will one day outgrow most of these allergies, but it has absolutely changed how we eat and live for now. Taking him to parties and other's houses is an exercise in vigilance for the smallest crumb that might contain wheat.  (Random cheerios can be on the floor in even the most fastidious of places.)  I quiz restaurant servers thoroughly about menus and food preparation, and we have figured out the places we can safely take him where menu items are made without his allergens. I keep thinking how fortunate we are to live in an age when so many foods he CAN eat are available to us, even down to the local bakery that makes a bread without ANY of his allergens (and it actually tastes like bread). But we still have to be careful. I never knew so many synonyms for wheat existed in ingredient lists!  I never knew what other parents with severely allergic children were going through until I experienced it myself. As we continue to educate ourselves, we have to keep educating those around us, too.

So...It may seem like I'm ignoring this site but to the contrary, I've been busy working on ways to expand my line.  I'm currently considering my options to raise a little capital to hopefully start introducing some more items to this line.  Don't give up on me!  I have SEVERAL ideas and can't wait to show them to YOU!!  Please keep spreading the word about my shirts.  I really want the public to be more awear of food allergies and sensitive to them and most importantly I want our allergy-kids to be safe.  Thank you for your support thus far!

Entry by Bridget Clough -
My daughter was recently diagnosed with Asthma (no surprise), and that means that now in addition to antihistamines and epi-pens we are carrying inhalers and a chamber with us at all times.  I realized a few weeks ago that my daughter was panicking when I would go to the bag for anything.  Her fear was that I was going for the epi-pens.  It dawned on me that she is REALLY afraid of the epi-pens.  We cannot have that.  At the same time I realized that I'm REALLY afraid of the epi-pens as well.  In my mind the needle had gone from tiny to something the size of a large nail.  All this coincided with a little medical issue of my own in which I was giving myself shots, so one night I decided to have my daughter come in and watch me give myself a shot.  We talked about the needle, how small it was, and how I didn't feel much pain when I injected myself.  I told her that all I felt was a tiny poke and then I didn't really feel anything.  Mind you, I picked a good night to show her; a few nights earlier I gave myself the shot and did something wrong, and in order to not give too many of the gory details, I'll just say that my husband had to clean the mirror off afterwards and I was left with a pretty good-sized bruise.  I think this little demonstration was helpful for my daughter.  She got to see my reaction to receiving a shot and it wasn't during an emergency or in her pediatrician's office where she is typically in tears at the thought of having to get a shot.  We were in the comfort of our own home and I was calm. To continue in this same vein, I also decided that when her epi-pens expired this year we would engage one of them and take a look at the needle.  A few days ago I hit the end of an epi-pen (the corner of the orange part only) against our countertop to have the needle come out and then she and I inspected it.  I let her carefully touch it and study it.  This led to another good discussion about needles and the purpose of having this very important medicine with us.  I think this is a great idea for parents to do with their children.  For that matter, I feel like it's a great idea to show everyone what the needle looks like. I feel much better about knowing how small it really is and am more confident in my ability to give it to her in the (hopefully unlikely) event that I would ever need to.  I've also been showing it to relatives that sometimes care for my daughter and they have had the same reaction.  Additionally I learned from a friend who is a nurse that this is a tactic that they use with children in the hospital as well.  Apparently letting them carefully touch the needle helps calm children's worries.

Entry by Allison H. -
As a clueless first-time mom, I remember purchasing a book about how to introduce solid foods to your baby. I was surprised to read that you are supposed to delay introducing certain foods because of potential allergic reactions and that you have to look for allergic reactions in your child after introducing any new food. "Oh geez," I thought, "like Sawyer is going to have an allergic reaction!" I was totally unprepared for the possibility that my son could have food allergies. How could he? No one in our family had them.

Around when Sawyer was seven months old, I introduced plain, whole milk yogurt into his diet.  He was a great eater, and I did not notice any sort of reaction for weeks. Then one day I had the bright idea to add ground flax seed to his yogurt, to up the nutrition. After taking a bite, he immediately broke out in an angry red rash on his wrists. I called the pediatrician and was told that he must be allergic to flax and to give him Benadryl.  After that incident, he started to get a rash whenever he would have yogurt as well, as if the flax had somehow pulled some sort of allergy trigger.

After cutting dairy out of his diet, I continued to be in denial about how bad the allergies could be. "He'll grow out of it quickly," I told myself. Rather than being super cautious about my son trying new foods, I just went for it, hoping nothing else would cause a reaction. But a bite of a treat at Costco with walnuts in it had him throwing up. A try at making pancakes with eggs had the rash back all over his body. I had some misinformed doctors encouraging my delusion that most children get over dairy allergies quickly. They told me to keep trying to feed dairy products to Sawyer every few months. Each exposure resulted in a worse and worse reaction, until I had a swollen-faced vomiting child, and I realized that the allergies were here to stay.  

When Sawyer was two, we had him blood tested for allergies, which resulted in a number of false positives. I remember the pediatrician calling me to break the news that Sawyer tested positive for soy, wheat, corn, and coconut allergies, in addition to the dairy, eggs, and nut allergies we already knew about. I stood there with the phone dangling, mouth agape, wondering how I was ever going to feed my child.  Luckily, a skin test did not indicate the same wheat, soy and coconut allergies, but still the allergy testing made me very aware of the reality of our situation, that life as a  mom would never be quite as I pictured it, with endless blue boxes of macaroni and cheese, ice cream cones, and peanut butter sandwiches.

When my daughter was born, I was hopeful that she would not have the same allergies. Part of me thought that maybe my son's food allergies were caused by his traumatic birth experience--an emergency c-section that left him with a compromised immune system, lots of antibiotics and weeks in the hospital. But her food sensitivities seemed even worse. Any dairy in my diet, and thus in her milk, left her screaming. One spoonful of yogurt at nine months turned her whole body a blistering red. She even reacted to soy foods. At that point, I finally cut all of the allergens from my diet as well and turned our kitchen into a safe haven where I have enjoyed experimenting with making delicious dairy, soy, egg, and nut-free foods. Although I wish that my kids could just go to social events and enjoy themselves without having to bring their own cupcakes, pizza, and Epipens, in the end I am glad for the way their allergies have made us watch our diet and replace junky prepared foods with made from scratch safe foods. The challenge, moving ahead, will be figuring out how to keep the kids safe without having to ostracize them once the school cafeteria replaces some of the safety of home.     

Entry by Bridget Clough -
I’m not quite sure where to begin with this story. I’m still stumped as to when it all truly began.

My pregnancy started like the one before it, with nausea and exhaustion. The only difference is that this time the nausea didn’t go away. I continued to throw up for the entire duration of the pregnancy. I hate to throw up, but in the grand scheme of things it wasn’t actually all that bad. I would typically take a few bites of something and then immediately throw it back up. There was no acid involved, so I was able to sit back down at the table and resume eating the meal from which I had just excused myself.

My daughter was born via C-section at 39 ½ weeks. Although she had been breech for the last four weeks of the pregnancy, she decided to do a little in utero gymnastics right before the C-section and on the big day presented herself head down. I was given the choice to leave or go through with it. I was hoping to have a VBAC but felt pressure to follow through with the C-section. This pressure came only from myself, not anyone in the room. In the end I was so relieved that I opted for the C-section! My daughter was born with the cord wrapped around her neck twice and my uterus was showing no signs of thinning.

At the hospital my daughter lost a little too much weight despite wanting to constantly be attached and nursing. We started supplementing to get her weight back up and then continued this regimen once we were released from the hospital. At our first appointment with the lactation consultant, we found that my daughter’s weight had continued to go down. It was strange for me to see her wanting to constantly nurse and yet not gain any weight. The lactation consultant was concerned and felt strongly that we should start her on acid reflux medication based on that and some other symptoms she had exhibited. The medication did seem to help with several of her issues but not the nursing. I was told at three weeks that she was making my supply go down and that I needed to decide whether I wanted her to just nurse for comfort or wanted her to get all of the breastmilk that she needed. I opted to provide the milk, and so began an eleven-month, three-week saga of pumping 12 to 14 times a day. When I started pumping I was barely getting anything, but within a matter of weeks I was able to provide ½ to ¾ of her daily intake of nourishment.

Why start my story with all of the above information? I still wonder if all of those signs weren't the early indicators of food allergies.

When she turned 1 year old, we put some peanut butter on a spoon and offered it to my daughter. Her lip touched it and she immediately broke out in hives around her mouth. I called our pediatrician and she suggested not giving her any nuts at all. A few months after that she ate a pasta salad that had tuna and mayonnaise in it, and again she got hives. Her neck was covered with them and she scratched so aggressively that she was cutting up her neck. Sadly this was not unfamiliar territory. Through the first year of my daughter’s life, she had several rashes that we could not get to go away until we finally consulted a specialist about them. We had to put her on a regimen of prescription-strength ointments to keep her eczema away. She would scratch so much that she would leave blood on her sheets and would wake up with huge cut marks all over her body. She also had trouble sleeping because she itched so badly.

After the pasta salad incident we kept her off of all nuts, eggs and fish until she turned two, when we were finally able to take her in for allergy testing. During the time leading up to the test, she had several run-ins with various foods. We discovered that she reacted the same way to foods that shared a facility with nuts and/or eggs as to nuts or eggs themselves. For example, she once broke out in hives, the whites of her eyes went bloodshot, and her eyes swelled completely shut when she was licked by a dog.  We discovered later that most dog food has egg in it for their coats. She also had the same reaction when somebody whose hand was licked by a dog touched her. If she pets a dog that licks itself a lot, she will react. She has been tested and is not allergic to dogs, but the egg in the food makes them just as dangerous to be around.

When we had her tested at the allergist's office, the final verdict was that my daughter was allergic to peanuts, all tree nuts, and eggs, and that we had to keep her away from any food that had been made in a facility or on equipment that handled any of the above.

Over the years we have adapted our household to be safe her needs. It is rare that you will find nuts in our house. We don’t ever have eggs in our home; instead, I have a long list of egg replacers for different recipes and we can still enjoy things like cinnamon rolls, pancakes, French toast, cookies, cupcakes, and doughnuts without the use of any “unsafe” foods. In fact, as a family we have all become healthier because of her diagnosis. The downside, of course, is that I have to be on high alert at any public event where food is served, and I end up making most meals from scratch to keep her safe (even when it meant continuing to cook through a case of bronchitis so bad that I actually broke a rib from coughing.)

It is my goal with this blog that we can all submit stories of discovering our childrens’ food allergies, talk about how we are dealing with food allergies, and essentially find opportunities to be in community and support each other through this whole process. Please submit your stories to me and I will publish them on this page!