OK, not the most eloquent of titles but it’s the only thing that truly resonates with how I feel tonight. Most days are just fine, and I am content with the hand that has been dealt my FA son, knowing that we will persevere through the murky waters of food allergies by being diligent and raising awareness, along with maintaining a “can-do” attitude at school, parties, play dates and any other type of outing. But there are days where as a mom, I wish this would all go away and we could just find a cure. Days like today.
After school I offered my son John a brand of vegan pudding we’ve had in the past, and that I knew was safe for him to eat because I painstakingly read the label numerous times, except for today it seemed. This packaging look nearly identical but it was a slight variation made with soy milk. As many of us already know, some soy milk-type products often have milk or legume proteins hidden in the ingredient list. John noticed right away that it was slightly different packaging and asked if it was OK (because our FA kids are REALLY good at NOT trusting labels). I looked at the label, and it looked OK..still not putting two and two together that it was slightly different. I told John it was fine to eat, and since he trusts his mother to give him good information, he opened it up and took a bite. Reaction. Albeit it was minor (itchy lips and small hives), it was still an immediate reaction. Once we countered the reaction with medicine, and saw that John was OK, and the itching was only on the outside of his mouth and not inside, I went to the fridge to double-check the packaging. Sure enough, after looking at every little ingredient…there it was; Locust Bean Gum from the Legume Family. Thank God John didn’t start wolfing this stuff down, and took a careful bite to check first (again, FA kids are REALLY good at NOT trusting labels). My heart sank. I failed my son. He trusts me to make good decisions and to keep him safe at all times, and I didn’t. I’ve written many times in this blog that “mistakes can and do happen, even in the best of circumstances”. This mistake happened on my watch, and if I’m vulnerable, so are schools, restaurants, etc. Wait, I take that back…they’re about a thousand times more vulnerable because they aren’t as lovingly and personally invested into our children’s health as we are. We’re moms, and will fight to protect our kids under any circumstance. Yet, we’re not perfect and slip ups happen even when we think we’ve got it all covered. Good to remember when we are trying to keep excess food out of our children’s classrooms….
Speaking of excess food, after this particular reaction my son left to go to basketball practice. Almost as soon as he walked in the front door upon returning, John broke into massive tears and sobbing. I gotta be honest, I haven’t seen him cry like this in a really long time. In fact it is rare John cries at all because he hates any excess attention on him. He’s always the kid who’s cool as a cucumber. So I knew something really bad must have happened at practice to shake him up. It was hard for him to talk about, but once he calmed down a bit he told me was embarrassed about his allergies, and for feeling different. I calmly pressed for more information, all the while fighting back my own tears, and he said that his coach offered his teammates a pizza party if they scored a certain number of points at their next game. John’s friend, who is very sweet and I know always looking out for him, told the coach John was allergic to pizza and couldn’t have it. John was mortified because he hates feeling different as well as if he were somehow preventing his friends from having pizza. He remained silent about his allergy and didn’t want to talk about it. The coach was concerned, and apparently unaware of John’s life-threatening allergies (this is a travel league, and usually all that information is relayed via paperwork and registration, so I guess I assumed wrongly his coach had this information). He said to the boys, “no problem, how about Jimmy John’s or Subway?” By this time, John said he just wanted everyone to stop looking at him, and to just have a pizza party. In that moment, I imagined John wanted to crawl up and go hide somewhere, because once again, all that attention on him made him feel different, and not like a normal 4th grade boy who just likes to hang out with friends and play sports. He goes great lengths to avoid looking different, and now that we’re approaching middle school, it’s only getting worse.
John’s emotions when he came home were raw, unlike anything I’ve ever seen come out of him. He’s growing up, and very aware of his limitations. He hates it, and at times, wishes his allergies would just go away. He wishes he would outgrow them, and he wishes for a cure. He doesn’t want his friends to miss out on things like a pizza party, because of him. He wants to blend in, and not have kids, coaches and teachers make accommodations for him. Once the tears stopped tonight, this is what John told me, straight from his heart.
My heart is heavy for John, and all the FA kids like him. Especially on nights like tonight. Everyone means well, everyone is trying their best, but sometimes, the reality is still that this is a very real disease that could cause death within MINUTES if not treated, or if an epi pen was left at home because “someone” didn’t want to feel different. That “someone” is John….and I fear he will continue to want to ignore his medical condition at the risk of trying to blend in. All I could do tonight was give my son my love, my hugs and my full attention to what his heart was saying. Before kissing him goodnight though, I reminded him that although I know how hard it must be to have a body that different from some other kids, he’s not alone. There are millions of kids out there just like him, feeling just like him, and want to be included in LIFE….just like him. He’s special, and that’s OK too. At the end of the day, we’re all different with unique challenges. Some kids have diabetes, some kids have learning disabilities, some kids have medical disabilities. But we’re all the same in that we just want to be loved, heard and accepted. And I guess that’s all that John and our other children, hell, even us, really need.
I don’t have any wisdom to share. I just wanted to send you a hug!
By 8th grade my son quit organized sports partly because he hated
to not be able to participate in the pizza parties or the end of the
year banquets. He is 16 now and I pray all the time he maintains,
especially in college or if he parties. He just got sick throwing up for
hours the other day because he bought some gummy worms similar to what
he used to eat and didn’t check the label and it was made in a factory
with nuts (which he is allergic to). Sounds like you are great support
for him and you’re lucky he is telling you how he feels. My son
internalizes it all.
This just breaks my heart… It sucks, absolutely! But I do believe that, if we parents handle it right, these events will shape our children to be loving, caring and highly compassionate people. I try so hard to spin times like this into life lessons, but inside, I just want to curl up in a ball with my boys and cry. It feels so unfair…
So sorry about your day. We never want to see our kids hurting, but hopefully all of this will make him a stronger person and a great father some day. It’s a lot of stress for you, but today will be better!
Food allergies are very serious. God gives everyone challenges. I always try to keep it in perspective. I could have a child in a wheelchair or a child with cancer. Of all the things my child could have, I’ll take food allergies.
Remind John that he can still play sports. He doesn’t have a physical disability that prevents him from playing the sports that he loves and being with his friends. People can’t see that he has a food allergy by looking at him. He looks like any other kid. He’s so lucky in many ways.
I know it’s hard for kids to put it in perspective. Maybe a gratitude journal would be good for him. Each day he can write down 5 things for which he is thankful. Or, it’s something you can do as a family at dinner time. We all have bad days, but hopefully focusing on the positive will help everyone remember all of the gifts you have and how lucky you are!
I have a 7 year old allergic to milk and tree nuts. She hates her allergies. I try so hard to help her feel just like everyone else concerning food. I cook and bake for school, Brownie meetings, and church events. I provide similar food being served at parties. Even though my efforts offer some comfort to her there are always unexpected treats offered at the different things she is involved at away from home. It is not a party for when it is spent worrying about having a reaction. She is so afraid of having to get a shot. I have to admit that I am sometimes resentful that events always have to be centered around food and that I am doing all the cooking and sucking up the exspenses. I find relief in your post because we go through what you explained, too, and I feel Iike I can vent. Sometimes I feel like a heal if I complain about all the extra planning and effort it takes to keep my daughter safe. I love her and my heart aches for the struggles and anxiety she has at such a young age.
This post breaks my heart. My 7 year old also has these similar feelings and concerns that John does but she isn’t quite mature enough to express it well. The result is lots and lots of angry outbursts and tantrums as well as severe embarrassment when the allergies call extra attention to her. We just started play therapy in an attempt to help her recognize and label her feelings etc and to hopefully give her constructive ways to handle these strong emotions. My biggest fear, much like yours, is that she will purposefully take risks as a teen to blend in. I can totally relate to how you feel about failing him. I have also misread ingredients and have been amazed that I, of all people, totally messed up and failed my child who trusts and relies on me. I was just skimming through Dr Woods book and wanted to share that he reminds us to let the mild reactions go and not be so hard on ourselves. When my Daighter was first diagnosed as an infant, the allergist was quite direct and firm: it”s not a matter of IF we will make a mistake, it’s a matter of WHEN. As always, being flawlessly prepared for reactions is crucial. I applaud you for, of course, being prepared!!
Thank you for writing your blog. I have a 1 year old at home that was diagnosed with FA, after he had a severe reaction to Gerber Stage 2 Macaroni and Cheese. Your blog and your book are helping me and my husband learn how to find and prepare healthy, safe and delicious foods for him to eat. I just wanted to let you know how much help you have been to us! Keep your chin up!
Bless his heart! I am wiping away tears as I write this. We all have days like this and it comes down hard on us as parents and obviously more so the kids. My daughter questions me all the time about food safety. I don’t blame her at all. I’m glad she is SO careful. Like you, I hope she will continue to be that way as long as she has food allergies. But, also like you, I fear that her desire to fit in as she gets older will result in her taking chances with her life. She is in 3rd grade.
I try to remind my daughter often that her allergies have lead us to a healthier lifestyle and that that is a big blessing. I try hard not to make food a big focus in our lives. I try SO hard not to make mistakes with what I give her. A couple of times lately we have had a scare with foods. Once an ingredient my husband used in something that could have been cross contaminated with nuts and once when I thought I had given her the wrong pizza(the wrong pizza won’t come in the house again). The look of fear on my daughter’s face is painful for me.
I pray God will bless you and your son with peace. I know your feelings well, but I also know(as I know you do) that we have to pick up, go on and try again not to make mistakes.
Thank you for sharing this with us. We need to know that we aren’t alone in this.
Linda
As I read your post I had to continually wipe the tears from my eyes because I feel your pain and I feel your son’s pain. What you described is exactly what I am feeling and what my ten year old FA daughter is going through. My heart breaks for her everyday when she comes home and tells me she just wants to be “normal”, she wants to walk through the mall and hold a pretzel from the pretzel shop or eat a slice of pizza.On a recent trip to the mall for some holiday shopping my daughter begged for something from the food court – even though I had packed snacks for her. After a careful review of our options there was not one item that was safe for her to consume, but we were able to get a pink lemonade from Subway – my daughter proudly carried that cup through the mall making sure that the words “Subway” were facing outward for the public to see. The simple things that we all take for granted are so important to our children. We all just want to feel “normal” and fit in. No matter how much I bake and cook yummy, delicious treats for her, it’s just not the same. We too had a scare two weeks ago after my daughter ate one bite of something she was allergic to – within seconds her lips doubled in size, she broke out in hives all around her mouth. Thankfully a dose of Benadryl took care of it. It was terrifying and I too felt that I had failed her because I let my guard down and gave her something that she had eaten countless times before and I did not read the label this time. Shame on me! We as parents can never, ever let our guard down, ever! My daughter will be entering middle school next year and I already see so many emotional changes in her this year. She does not want to stand out, does not want to be labeled as “different”. I worry so much about her safety as she gets older and is not under my “wing” as much as she is now. As much as I try to give her a normal childhood full of those normal childhood experiences and opportunities, her life is not the same as many of her friends. Thank you for helping me remember that I am not alone and that my daughter is not alone in this painful journery. On a side note I want to thank you for providing so many delicious recipes – I celebrated my birthday last weekend and wanted a cake that everyone in the family could enjoy – we made your amazing carrot cake with cream cheese frosting! Absolutely awesome – it has now become our #1 favorite cake! So, thank you for being such an inspiration to so many of us and thank you for sharing your story so that we don’t feel so alone in this battle.
Blessings,
Stacy
Thank you for your honesty. You are such a blessing to many of us, for sharing not only your fabulous recipes but also your stories of triumph and tribulation. We are not perfect, and all of us have had or will have those moments where we make mistakes. Its how we deal with them that counts. Letting our kids know that its ok to let their feelings and frustrations out is paramount to their well-being. And as parents, it definitely does help to let ours out as well. Its true- FOOD ALLERGIES SUCK!!! Gosh that felt good!
Hey Kelly,
Wow so sorry, it is so hard I know, my 8 year old has a very dedicated nurse at his elementary school, I just wish the teachers could be a little more “educated”. Upon going to his health class and yes I said HEALTH CLASS, the teacher sat the children down and proceeded to hand out mnms………..to my son (milk proteing allergy), and a girl (peanuts, tree nut allergy), along with the other students and then none to the other half of the class, this was to show emotions of how children feel without, my son who has been told even though your school knows of your allergy DO NOT EAT ANYTHING UNLESS I SEND IT, and this proves my point once again that we the parents are our children’s voice!!! My son took the candies up to the teacher only to be made to feel, first embarrassed, but then made to feel bad for his allergy and the inconvience to this teacher, to have to find something else for my son,the little girl in his class who’s parents I contacted as well,she opted to throw hers out after seeing my son treated this way…. well let me tell you I was MAD!!! Here again after talking to the principal, teacher, nurse, it was a mistake, but come on, the health teacher!!! Most days are incident free, but it only takes one time….Oh well, like I said no one understands the daily challenges our children face and the constant struggles we as parents face keeping our children safe with allergies, have a great holiday to all.
sorry my typing gets crazy when I get mad…milk protein : )
Thank you for sharing your heart with us. Tears are streaming down my face as I know too well what you speak of. Allergies are awful!!! I’ve been that mom who missed milk on the label and then have my son have a horrible reaction. I have seen him cry to be like everyone else. It hurts. I know we have so much to be thankful for but it is good to not bottle up these feelings. Thank you for letting us be there for you. Much love and hugs to you.
Sherie
All of these stories are so familiar to me, from mom failing to make things safe for her kids, to the panic of the reactions, to the the hating to make treats for all of the parties and gatherings just to make sure things are safe for your kids. I have 2 kids w/food allergies (15 and 21) and have been through too many life-threatening reactions for anyone’s lifetime (even one is too many!).
I hate when people comment that “it’s a good thing she was born to you, because a kid born to me wouldn’t survive with food allergies”, or something like that. God has presented us with these wonderful kids and he has also provided us with resources and abilities that we need to take care of them. We’ve adapted; we didn’t “come” this way! It’s a daily challenge to live this life.
This year we incorporated a 504 plan into my 15 year old’s school plan. It has helped tremendously with her not having to feel like she’s asking more of anyone or seeking attention due to her FA. She hated the initial meetings, etc. because that did bring attention to her, but it was just with a few of the school staff and they took it from there with setting up meetings with the rest of the school staff. I didn’t have to make a special point at the start of the school year to make sure that everyone had epi-pen training, was aware of her FA, that I would have special notification for special “food events”, and that coaches hadn’t been omitted. She has adapted well to this new plan and overall feels more accepted and able to deal with her allergies. She is an amazing and encouraging girl to those around her and sees how her FA allow her to see others’ differences and how each of us are individuals with our own “special needs”.
As far as hiding the food allergies, my 21 year old likes to do that and has had some pretty severe reactions because she doesn’t like to be different. I like to think that she has made it through that now that she’s in college and living on her own. I’m not sure, but at least she hasn’t had a reaction in 2 years. College is a difficult transition for anyone, but with the FA it has even greater challenges for parent and child. We are already starting to plan college visits for our 15 year old and trying to find a good fit for her. I believe the 504 plan will help to clarify her needs.
Just continue to be there for each of your kids. Pray for them daily. Listen to them and encourage them. Help them to feel special in their own way for the skills and abilities unique to them. You are doing a great job – just keep at it!
Me again. I told my fa son about this and he immediately knelt down and prayed for your son. What a good reminder to give our hurts to God.
Everyone’s stories are so touching. This is a glimpse into the future for me as I am new to food allergies. My daughter is 2 and allergic to egg, milk, and soy protein. We have already been excluded from play dates and even extended family gatherings prove difficult. It is comforting to know I am not alone.
Kelly,
My heart goes out to you. I identify with what you are going through because I have children with medical “life threateneing” needs. There is not a single day that goes by that I do not wish I could take on my childrens medical ills so they would not have to deal with it and so they could feel “normal” like other children. My heart breaks more often than I can count, but life is a journey with ups and downs and many challenges along the way. But it is how we chose to face those challenges that is important. Take comfort in knowing that you have your familys best interest at heart and you are doing all you can. Tomorrow will be a better day
Thank you all for sharing. Reading these posts is so supportive – like a big group hug! Sometimes I talk about “obvious” physical disabilities vs food allergies. For example, if most of us see someone in a wheelchair needing some help, say, near a door, we will run to help out. Food allergies are not physically obvious, and the majority just don’t understand them yet. Think about 30 years ago how there were no handicap access or parking spots… One day, most people will understand food allergies, and/or there will be a cure. I keep reminding my two food-allergic boys (6 and
that we each have things to work with and things that we need to work on in ourselves. We are all unique, and amazing in each our own way. However, no one is perfect. Thank you all for sharing in this journey. Merry Christmas and Happy Holidays.
Kelly,
We’ve had days like the one you just experienced and we have found that sometimes it’s just OK to say that life with food allergies stinks. I know that heartbreaking feeling as you console a teary eyed little boy who unexpectedly found himself in a food-related situation. Finding the good in situations sometimes gets tiresome.
We have two boys, 11 & 15, with serious food allergies. Our eldest, Andrew, reminds me of John. When Andrew was younger, he was allergic to peanuts, tree-nuts, seeds (anaphylaxis), as well as, dairy, egg (fairly serious reactions), soy and wheat (milder reactions). He loves sports, so we’ve dealt with many teams and many coaches over the years. I mentioned your recent situation to Andrew before he left for school this morning and asked him if he had any comments. After rolling his eyes (he, too, dislikes the fact that he has food allergies and dislikes having any attention drawn to himself, so he could relate to John’s experience), he told me that he just likes to have fun and participate in things. If there is questionable food, he just doesn’t eat. No big deal (15 year old perspective).
I spent a great deal of time as a room parent, snack provider, and party organizer during the years our boys were in elementary school. Now that they are in middle and high school, I have found that it is much more challenging to keep ahead of the food. As they become more independent, they have made the decision to not eat if there is questionable food. We do our best to ensure that there are safe food choices at banquets and parties, but their circle of friends has widened and they are involved in more activities, so I can’t be everywhere. This leap of faith has been (and continues to be) a challenge for me…I could worry myself silly. Prayer definitely helps.
When Andrew was in kindergarten, we befriended a family with a boy who was four years older than our son. Since he had basically the same allergies, was enrolled in the same school system and was active in the same types of activities as our son, we used his “path” as an example. Having this mom to touch base with, bounce ideas off, plea for help and just vent, has provided me with so much support and hope over the years. This older boy has helped to pave the way for our sons. When we are faced with a new situation, I check in with this mom, see how they handled the details, discuss these findings with our boys, make a plan and then move on from there.
My husband and I have always said that we would not allow food allergies to stand in the way of life for our boys. I must say, that living up to this statement was easier when they were younger and we had more control over their activities. Last year, Andrew came home from school with a packet of information detailing the summer adventure trip (this is a huge deal that the kids look forward to for years). We live on the east coast, and the trip was to Alaska. As parents of children with food allergies, I’m sure that you can imagine my real feelings of concern and worry, as I smiled and said “I know that you have been looking forward to this trip for years. We’ll look into it”. After months of planning, role playing and praying, Andrew took off for Anchorage. He had a truly life-changing experience, and one that I think was even more profound due to the independence he gained by traveling without us (he was very, very well chaperoned by very responsible and reliable adults.). Thankfully, there were no major issues, however not everything went according to plan, so Andrew had to advocate for himself and work with the chaperones to figure out solutions. A growing experience for all of us. I mention this story, because I do believe that all of the situations we faced (both good and challenging) during the elementary school years helped to shape how Andrew deals with his allergies now that he is in high school. If he not found himself in any unexpected situations when he was younger, he may not have been able to deal as efficiently with situations when traveling without us. We do realize that dealing with
food allergies requires constant vigilance, so I don’t want anyone to think that we know all, or are doing everything well. We take life day-by-day, meal-by-meal and snack-by-snack.
Sorry this is so long. I am a regular reader of your blog and regular baker of your recipes! Thanks for all that you do to educate about food allergies. We wish you well. If our family can be of help to you or John, please don’t hesitate to contact us.
Thank you for writing what most of us feel. I’m so sorry about what happened with your son. What makes it harder on everyone is the lack of knowledge and education about food allergies. We are reminded daily that our kids have LTFA and it brings on such anxiety for us and for our kids. There are so many days that I wish I could just take my daughter out to eat or buy her anything at the store without having to review labels and checking for cross contamination. She is still little but I know that in the future I will be dealing with the same emotions that your son is having right now to just “fit in”. Hang in there and thanks for everything you do for US!!
Well said Kelly.
Oops – ages 6 and 8. Funny for the day – I made chicken burgers, carrots, and fries last night and was told by my precocious 8-year old that “fries don’t go with burgers, Mommy!”. I don’t normally make fries with burgers and veggies… They have never eaten at a fast food restaurant due to their allergies. Sometimes food allergies are a blessing I’m disguise!
Kelly, I am the mom of 2 boys with multiple food allergies. I think from the above comments to your post, and how much you see people respond to your blog and your recipes…if there is one thing you can tell yourself on a day like you had, is that you are not alone. We parents of FA children may not see each other everyday, and we may feel like we are going it alone sometimes (or a lot of the times), but we are not. It’s so hard to remember when you have an episode like with the vegan pudding. But you’re not alone. We have all dropped the ball at some point, and thank God that nothing worse than a rash, or hives occurred. And it just makes us better going forward. And it’s an opportunity to teach our children to, yes, even question us and that is ok. I’m so glad that John was ok, and I’m so sorry you had this kind of day. I agree with your blog title 100%. Food allergies DO suck. I can not tell you the number of times I want to wish them away, or get envious when I see a family out getting ice cream, or doughnuts, or just going out to dinner and ordering off the menu. I am a grown woman and I literally get jealous of those “normal” people and their children. My boys are 7 and 8 years old, not quite as old as John or some of the other children mentioned above, but I know that I am not looking forward to the preteen/teenage years when that want to be “normal” could very literally put our children’s lives at risk. I’m sorry that these new aspects of FA worry are coming up for you and John. I read your blog faithfully and am so glad that you write it and that others respond. We all need as much support as we can get. All the best to you, Shawna (MA)
Oh my. I know how you feel. When our children hurt from being left out, the pain is so raw for us too. And when you feel like you botch something up, it is so much worse. Thank God we live in a time where there are life saving medications. I am struggling myself with the social aspect of these allergies. My tree nut allergic daughter is in Brownies, and I was notified late in the evening before her Brownie meeting that they would be “tasting” the new cookie at the meeting, one that “may contain” tree nuts. So I told them how they had to serve the alternative they planned to offer her to prevent cross contamination, and asked if it would be possible to give the cookies to the other girls to taste at home. This was the second activity this school year involving food she could not eat. The response was an emphatic no. I then told themthat it was not just an issue of safety but that it was emotionally difficult for my daughter to be left out of activities. The response to that was scathing – they have been compassionate, how could I question that, they had made accommodations and that was the best they could do, this was important because it was marketing the cookie, my daughter had to learn to deal with it. Several moms were there, many of them people I considered friends, people whose kids I had held when they were hurt, who I thought were an important part of my “village”, and none of them stood up for me or my child. These women all knew that almost exactly a year before, I had put a needle of life saving medication into my child’s leg after she ate what should have been an innocent candy cane. I held it together until they left and then cried all the way home. This journey we are on with our kids is sometimes so gut wrenching. Thanks for letting me vent – it can get so lonely when you realize that the people you thought understood don’t and frankly don’t want to.
Could have written this post myself… very well said! I have a 4th grade boy too, wishing more than anything else that he didn’t have to have food allergies. My heart hurts for him that this is his life. Praying for a cure. Hugs to both of you.
My FA son had a reaction on Tuesday too. He took a drink out of my milk cup instead of his rice milk cup. Instant hives on his lips and belly. Luckily we stopped it with Benadryl. But had to call the dr. because his usual dose did not stop his reaction. My son is 6 and cannot remember any of his allergic reactions when he was a baby and toddler. Now he knows what hives are and feel like. Luckily we didn’t need the epipen this time. Just goes to show that we have to always be on our toes. ALWAYS!
I too have tears running down my face because the heartache is so BAD. FA do Suck! I pray for a cure every night. I know things could be a lot worse, physical or mental disabilities, etc. I can only imagine how hard it is for those families. I can deal with the FA lifestyle of cooking, baking, eating at home, taking snacks everywhere you go, etc. It’s just hard to watch your child hurt and cry about it. That rips me apart inside. My daughter is only 3. I haven’t even dealt with school issues yet. Birthday parties, ice cream trucks, treats at Christmas events, family gatherings with cousins who are not food allergic, etc are our issues right now. We’ve left many events in tears because she could not have what other little kids were eating and is too young to understand WHY! Please God, bring us a cure soon.
What is so nice after reading this post and all the comments is the reminder that we are not alone. Thank you.
Thank you for this post. My daughter is in kindergarten, and I’m concerned about what will happen as she gets older with her food allergy. Right now she just says to me she doesn’t think it’s “fair” that she can’t eat whatever she wants, and other kids and her siblings can. I too make all the treats for the whole class. Actually, I need to make cookies tonight to send tomorrow. At times I am resentful that I have to always be the one to make the treats, but I do it for my daughter. I do it so that she can have the treats, and not feel left out, yet again. We all know that there are times that our kids will be different and left out, and we won’t have control over that situation to try to make it “right.” However, if by me staying up later to make cookies helps her feel more like her peers, than I will do it everyday if I need to. Sometimes it just gets overwhelming and I don’t want to always be the postive one about it. Sometimes I just want everyone to know how much it sucks. With the holidays approaching, it’ll be another reminder as I bring her all her own food. I know other parents with children with food allergies understand what I mean. Sometimes it just sucks, and it’s ok to admit that. I’m sorry that you had that kind of day when it just “sucked” to have a child with food allergies.
Take care,
Beth
Food Allergies Suck. No doubt about it. It is so sad that our kids have to endure things like this.
I’m so sorry this happened. When you said you failed your son that really hit a cord with me because that’s how I feel all the time. It’s exhausting for everyone. I appreciate you sharing; it helps me not feel so alone.
Maybe our FA kids should read these comments, too, to know they are not alone! I am struggling with egg and dairy allergies with my 8-year old. We just had him tested and the results seem to be higher than ever.
Everyday I think of what a hassle it is, but he is so sweet. Even though he is dairy and egg allergic, he asks me to be sure his lunch is nut-free, too, so he can sit with his nut allergic friend at school!
This time of year is especially. WHY do we have to center so many festivities around food???
My heart goes out to all the parents and kids reading this and I hope each of you has a safe and happy holiday season!
My daughter is allergic to dairy and peanuts and I feel your pain.
I’ve been there too. I refer to these days at “the food allergy blues”. It’s the worst because I feel horrible for the innocent mistake I made and for the innocent circumstances that surround having a child with a food allergy. I know there are more days like these coming – and they always seem to follow every reaction (even the minor ones) – but they always go away too and life returns to normal. I strongly believe that we will find a cure one day. I have a lot of faith in the work that FAI does and am determined to support those who are searching for a cure. Keep your head up!
It is so helpful to hear all these stories and know that my daughter and I are not alone. We have those days when the food allergy blues hit us too. Whenever they hit your child, they hit you too. My daughter loves her soccer team and hanging out laughing and giggling after the games. But it’s all dependent on what types of snacks the parents bring. On days when her teammates have cupcake frosting all over their mouths and noses, or donut jelly dripping down their chins, she just gives me this sad look and asks to get out of there, fearful that someone will want to give her a high five or touch her without remembering her allergies. She’s always so quiet on the way home when that happens. It’s not fair and I don’t know how to comfort her.
I so appreciate your honesty. Sometimes it feels good to admit the truth: food allergies do suck. More for the kids, but also for mom too who has to carry the weight of the world on her shoulders trying to be the one safe haven who can always be trusted. I feel for you situation as I have three food allergic boys. I thank you for your recipes, too, especially as the food season is upon us. I will be making 50 cookies and 50 cupcakes next week for school functions!!! My son is so glad that it is crinkle cookie time again, thanks to your recipe!
It’s a tough age, I think. It is harder some days than others. I have a 9 year old, and I totally feel for him and you. On the other hand, what a great friend to speak out for him! What a great coach to immediately change the incentive! Sometimes it is hard to be on the receiving end of a kindness. That’s been our issue lately too. Friends and other parents are getting to know us and our situation and want to do more, but it’s hard to figure out something to do without making a big fuss about it. I really hope he and the team make the points and celebrate somehow. Let us know how it turns out!
They do suck. And I’m so sorry — big hugs to you and your son from someone who does understand.
Hugs and prayers for both you and your son. It does suck having food allergies. Two of my three boys have allergies (peanuts, tree nuts eggs, soy, rice, fish, shellfish, chicken, broccoli, cauliflower, green beans, peas, and bananas) as well as my husband (oats, rice, shellfish,and kiwi)and myself (peanuts, tuna, and pears). So we also spend a lot of extra time preparing for parties and family functions. I was never known for my cooking skills (read that as I used to spend as little time as possible in the kitchen) so this has been a complete turnaround for me. Thank goodness for you and other FA moms who have paved the way and developed many wonderful easy to duplicate recipes for those of us who have come into the food allergy world after you. Keep the faith–tomorrow will be better. Thank you so much for all you do.
Thank you for sharing the good, the bad, and the painful. Your honesty helps every single one of us.
Kelley… not matter how diligent we are, there are days when things slip by us. I have had those days and they seem to happen more during the holidays. School parties, family parties, get togethers. We’re all human… and we share in the pain. There are days where I wish I could just take away their allergies for them:-)
IM FREAKING OUT! I just read your post and locust bean gum rang a bell to me but has never been on my radar. I went immediately through my daughter’s food and cant find what its it, but I know I have seen it in something she has had. On that note, I found pea protein in her english muffins and butter that she can’t live without! They are in the TRASH until I can get an answer if pea protein is not safe. I have never been told by an allergist OR doctor to keep her away from legumes EVER!!!!! This is mind blowing and so obvious that I feel so completely stupid and irresponsible right now. I just had to write you. Thank you. Am I going crazy????? What butter do you use??
Thank you SO much for anything! and everything you have already done!
I enjoyed this post and all of the comments. Sometimes as a mom to a FA child, you feel so alone. It’s nice to know we’re not alone. I had a similar experience. I let my daughter (allergic to peanuts, tree nuts and eggs) eat Laffy Taffy that contained egg. I had checked the label (and she had eaten other forms of the same taffy before) and didn’t see the egg listed in the ingredients. I felt horrible. She immediately started vomiting and broke out in hives. I wish I could be as strong as my daughter at times. Situations bother me much worse than her. One day at school last week, I found out that her class would be making noodles. I had no idea. I had nothing planned for her. When I asked the teacher about letting me know these things ahead of time, she said she just doesn’t think about it when she is planning things. Really? She wanted me to be assured that she does think about it when snacks are being passed out. (My daughter has a stash of safe snacks at school.) Sometimes it’s hard to be assured when others are taking care of our children. Sorry for the venting. I just don’t know anyone personally who deals with food allergies that I can talk to, so it was great to read about all of these families.
Hi Tera, thanks for your comments and questions! Technically, any food can cause any allergic reaction even if it isn’t part of the 8 major allergens. My son is allergic to peas and legumes as well (legumes and peanuts are in the same family.) Talk to your allergist about getting tested for pea allergies if you are concerned. Don’t feel stupid and irresponsible…ALL of us are learning how to navigate through different ingredient names, etc. It’s all a learning process. Also, I use Earth Balance Buttery Sticks, Spectrum and Fleischmans UNSALTED margarine sticks. Good luck!
I am completely humbled and grateful that I have this blog to share with all of you, because your comments left me weeping and full of love for all your support and kindness, especially when I was feeling so vulnerable and saddened by my son’s experiences. After reading every single comment, it’s hard not to get choked up by all your responses. We are all in this together..and what an amazing community we are…full of hope and love, and incredible support. We are all bonded by the threads of our children’s experiences, whether they are triumphs or heartbreaks, we are all in this together. There is so much to learn from one another, and I truly gain strength for all YOUR experiences and kind words. None of us is alone in this, and it is a joy to know I can share my experiences with YOU. Thank you all so much, love you all. xoxoxo
It is good to know that others feel the pang and keep on moving ahead. We are moving ahead right now and mixing your Crinkles recipe for some Holiday “safe” smiles. Thank you for your wonderful site and cookbook. Merry Christmas.
I would really like my 15 year old son to read this post right now but he is not available to do so…therefore I will give my perspective on it as a mother of a child with mulitple food alleriges…dairy,egg,beef,sesame,fish,shellfish,peanuts/tree nuts,raspberries and mustard. This touched me dearly…I always worry about how my son with food allergies can and will socialize with his peers. Food is such a major player in social acitivities. When you are limited with food allergies…what do you do? My son loves and lives hockey! As a family, we have avoided all tournaments and food involved get togethers. Not like there were many, but our eczema issues and my lack of trust in restaurants would not allow me to venture into it. My younger son, 13, has a peanut/tree nut allergy. I was less diligent about informing his coaches about his food allergy and so when I did, and filled out the form, the coach came back to me with an already filled out form from my husband. Can I just point out that they had no idea he had a peanut/tree nut allergy…I sarcastically mentioned this to cut the tension…the next thing I knew they sent out a memo to all the parents on the team that no food would be allowed in the dressing room. (previously treats were being brought in but Matthew is well versed in not eating anything from home) As parents, we try to cover all the bases…it is not easy…we make mistakes…yes…mistakes for us can be life threatening…I totally understand your feeling that way. Yes….FOOD ALLERGIES SUCK! If I could wave my magic wand…they would be gone…not just for my boys…but for all children!
Im so very sorry
‘Food Allergies suck’ is the most honest blog title I’ve seen for a while, but I knew a heart-wrenching story was coming. All kids just want to fit in, but food allergies are one of those things you just can’t leave out of the conversation, EVER. I know I’ve been very lucky so far that my daughter hasn’t complained about her food allergy, but I know it’s just a matter of time (she’s 6 now and just starting to become more socially aware). I dread the day that Kelly and John just had, but I know it will come.
I’m so thankful that you shared your story, knowing we’re not alone and are part of this allergy community makes it all a bit easier.
My 3 year old son is allergic to peanuts (life-threatening allergy), eggs (severe — could be life-threatening at some point) and dairy products. The holidays (starting at Halloween) are so difficult! Prior to having a child with food allergies, I never realized exactly how “food centered” school activities, church activities and play dates can be! Our most recent scare was during his school’s Thanksgiving Feast, in which parents, grandparents, friends and family are all invited to bring a dish to share and the food is served buffet style. I prepared by making my son’s food ahead of time and serving him from the containers I brought from home (kept those containers at our table — no one else had access to them). Meanwhile, some family members went through the buffet line and got what they thought was a simple green salad. After taking a couple of bites and looking at the salad more closely, our family realized that the salad contained WHOLE PEANUTS! We were all horrified! My son’s face ended-up covered in a rash. I was able to treat him with Benadryl and Singulair. I have not had to use his Epi-Pen — yet. And, I am thankful that Singulair and Benadryl did the trick this time. I think this episode was a reminder to us all to stay vigilant and keep “fighting the good fight”.
Thank you for being so honest and for “fighting the good fight”.
Leslie
You think he’d like to pen pal with my 9 year old? If so, FB me and let me know. I know how you feel, I’m a lunch lady in the same district my son goes (but not the same school) he wanted to have a meatball sub and all the indgredients are fine, so I let him buy that day. What I didn’t know is that the lunch lady at that school puts cheese on the sandwiches. When he said something “I didn’t know this had cheese on it” She said “IT’s only a little” (there is a notice that pops up on his screen telling of allergies, and she knows about it anyway) what he heard was “Tough kid, that’s what you get” He was afraid to say anything else and went without lunch that day. So ofcourse against his wishes, I went into the school the next day and spoke with the L.L, the pricnipal, and his teacher (I even called my main boss, which is also her boss) he hated it, just like your John, he didn’t want to feel different. My heart goes out to you and John, hang in there! and your right, Food allergies suck!
So sorry, Kelly! I understand the emotions … we so often just want Sarah’s allergies to go away. We had to do the EpiPen last week and then spent a few hours in emergency with her hooked up to IV because she’d had bread (that she’d had no less than a million times before) that has always said, “May contain …” I guess this time it must have contained something. I bought the bread, so she trusted me! She even told her friends and dance teacher that she couldn’t understand what was going on because she’d had dinner that her mother had made at home. She was in a dance class when the reaction started. Has anyone else noticed that exercise seems to exacerbate symptoms?
Anyway, my thoughts are with you. So appreciative of all you do for us food allergy moms! Merry Christmas to you and yours.
Just a quick note to let you know that you’re kind of a superhero around our house! My boys ask for your recipes by your “name,” Food Allergy Mama.
As frustrating as this struggle with allergies and reactions can be, you contribute so much delicious joy to our lives. Life has been a lot more fun since I found your cookbook and website a year or two ago. It’s still a pain to have to ask what’s being served at any given event, still a struggle to find safe food to eat at restaurants, still exhausting to be vigilant about reading labels, but we are grateful that your love for your son has blessed the rest of us with wonderful treats we can share and enjoy.
Thank you Kelly. My allergy boys are 3 and 20 months and when they have reactions, even to new things, I have that feeling of failing them. Thank you so much for sharing the good and the bad with us. I know I have a long hard road ahead as my 3 year old now reacts to secondary dairy contact on the skin along with a long list of other allergies. It is great to know that other mom’s have bad days too.
God bless and happy holidays!
Nicole
I am sorry. I can imagine how stressful it is for you and your son to have to be on guard 24/7. Do you think the team should not have pizza because of your son’s allergies. How do you achieve a balance between keeping one highly, highly sensitive person safe yet not having their particular needs dictate the habits of an entire community.
One major difference between food allergies and other parenting challenges is the expectations of other people. If my child is diabetic, all the other children in school do not have change the way they eat. Learning differences do not mean the entire class needs to be taught in one way. How to FA kids not feel entitled since every event involving food has to be focused on what is safecforcthem and everyone in that world HAS to conform. Obviously the allergy community sees things differently, but that is how much of the world at large sees it.
My daughter has food allergies to milk, eggs, and nuts. She is two and is aware that she cannot have certain foods, but is so young that she doesn’t feel “left out” when others are eating foods that she is allergic to. This being said, I don’t feel that the team should not eat pizza UNLESS it’s such a severe allergy that even being in the same room with the product can cause a reaction. In my eyes, as a parent of a daughter with allergies, when something is life threatening, hopefully others, even children, will learn that tolerance and accommodation is vital to the person’s well-being. If the food is not life threatening but hives or other moderate reactions occur, then in my opinion, others should just be extra careful after eating by washing hands and surfaces thoroughly.
I see food allergies like weapons. If there’s food out with ingredients that your child is allergic to, then that’s like leaving a knife out. There’s a chance your child won’t get it, but if he/she does, then a minor scratch could occur, or a severe injury or even death. So when you’re around others or at other people’s homes, they shouldn’t leave “knives” laying around. Also, it’s our job as parents to teach children not to play with “knives” and be aware of what is safe and not.
This is the first time I have been to this site and I must say… I love it! I was searching holiday baking recipes and came across food allergy mama. Thank you so much!!!
I just heard about you for the first time on Martha Stewart. I wanted send my sympathies on your situation as I personally have very severe allergies to a lot of things. My worst is dairy, it’s so severe that I’ve gone into shock from being in the same room as pizza.
I am so appreciative of someone like you in this world raising awareness of the complications of allergies. Packaging similarities are a major issue but another one that I don’t know if your family has come across this but many companies change up their formulas every few years changing only their ingredient list and nothing else on the packaging. Randomly adding our common allergens w/o warning.
I wish the best to you and your family and please, please, please keep up the wonderful vigilance despite how tiring it can be.
I can totally relate to the scare that you had. When my son was about 10 months old we had our first major reaction because I gave him veggie cheese instead of vegan cheese. I was still learning about what were his triggers. This was also 8 years ago and there were not many choices when it came to dairy free cheese. He had about a half a slice and in about 15 minutes he had hives and labored breathing. Luckily Benadryl worked and we did not need to go to the hospital but that made me be even more vigilant.
My son is now 9 and has grown out of his allergies but we went through having to bring special treats to parties and school and he couldn’t buy lunch at school until last year. That was the hardest part for him. He understood that he couldn’t have the cake but that was only once in a while and as long as he had a subsitute he was fine, but lunch was an everyday reminder that he couldn’t have what everyone else had.
I now have a 2 year old with dairy, egg and peanut FA and so even though I have the relief from one FA I now have to worry about another. The only hope that I can give is that some kids do grow out of it. I did not think my son would because his FA was so sever but luckily he did. Now I will have to play the waiting game and see if my daughter also grows out of it.
My daughter is 4 and has multiple food allergies. I dread the day she comes home from preschool/school and has a similar story. I can only hope that I will have as much composure as it seems you had (at least in front of your son).
Somedays, I just wish there was a school/activity just for food allergic kids so they can know they really are not alone.
John – big hug to you from our family! I don’t personally know what you’re going through, but I know my heart hurts for my little boy who can’t have eggs/milk/peanuts when I think about him missing out on pizza parties, ice cream socials, etc. I know it’s hard, but you’ve been a great example so far and I hope my little boy can handle his allergies as well as you do! And to your awesome mama…yes, food allergies suck, but you make them suck SO much less
Kelly, I am just catching up on the past month of your blog- this is a beautiful post and so true. We all just want to be loved, accepted, understood. It’s the most basic human need, and universal to all of us. . .food allergic or not, young or old, gay or straight, black or white. . .we are more similar than we are different. If only the world would become a more embracing place where no one would fear hostility for their God-given differences. You are a great mom for showing the unconditional love we are meant to give to our children and spreading that love to the world.
Hi Kelly,
This brought tears to my eyes. It’s so hard for our kids, isn’t it? To be different and to not get to eat the same stuff as everyone else? My almost 4 year old daughter is allergic to eggs and peanuts, and we were with my in-laws over the holidays, and of course, they don’t pay as much attention to the allergy issue as we do, so it was so hard when they plunked a big plate of donuts on the breakfast table, right in front of my daughter, and I just saw her little face crumple because she knows she can’t have any. I guess there’s only so much we can shield them from, only for so long.
Anyway, we love your book and I’ve tried lots of the recipes and they’re all great!
Thank you,
Jen
Dear Kelly,
I just found your blog and think it’s wonderful. My son is 8 and is allergic to all nuts, dairy, eggs and most tropical fruits and mildly allergic to soy. His peanut allergy is very severe, which was confirmed the day he grabbed a friend’s water bottle that had peanut butter on the lip of the bottle and he immediately had trouble breathing.
I am writing because I just saw “Peanut Butter Cheerios” at the market today. I almost passed out. Cheerios! One of the few safe, innocuous go-to foods. The food that toddlers drag to parks, Sunday schools, preschools- the food that is everywhere! Since my son is 8, I am less worried about him forgetting this new danger, but I am terrified about what this means to our peanut-allergic kids. I just thought you and the other peanut-allergy mom blogs could get the word out on the street about the new flavor. I know people are concerned about cross-contamination, but I am more concerned about how identical they look to the old faithful Cheerios!
I wrote about it on my facebook page and was shocked to have several people respond that “certainly they don’t use real peanuts” – this had been one of my fears of parents who just don’t get it! If it is peanut-flavored it is peanuts. These are the same parents who think a peanut-free campus simply means no actual peanuts or pb and J sandwiches, but dont really care about cookies, granola bars, cereals etc…
That is why peanut butter cheerios are so incredibly dangerous- the ultimate wolf in sheep’s clothing. Sorry to rant, but I’m really concerned…
Thanks Kelly for any help you can do in spreading the word!
Thanks for any help you can offer, and for all the work you do on your blog!!
Enjoying your blog and the links to all the others…great tips and encouragement. My daughter is 6, and was diagnosed w/food allergies as an infant: eggs(extremely severe), dairy (severe), peanuts, citrus fruits, mango, blueberries. As a baby she was constantly scratching to the point of bleeding and we kept using steriod creams to stop the itch. It wasn’t until a few scary vomiting episodes and trips to the urgent care that her pediatrician had her tested. I was still nursing her so I had to change my diet as well. At first I felt like a chump for contributing to her illness for so long, but then I focused on making changes and educating everyone that came in daily contact w/her. Family members took it seriously (grandparents have copies of info/emergency card and meds at their homes), so did her day care and eventually elementary school. We’ve had several bad situations/reactions and learned from our mistakes, still learning. Thank God we’ve never had to use her EpiPen.
Before she learned to speak or walk we taught her why she couldn’t eat certain foods “no baby, tummy hurt”. I got serious about changing the way I cook and learning how to bake treats for her to take along. By the time she was 3, she was diagnosed with asthma, and then 2yrs after that, alopecia (aparently they can be loosely related?). Although my child has sufffered challenges that seem cruel for someone so young, after I finish my tearful pity party I remind myself how truly blessed we are. No, she can’t eat certain foods, but thank God she has plenty of healthy things to eat every day. Yes she has to use her nebulizer for weeks on end following bad reactions, but that’s better than breathing on a machine while in a hospital. Yes she’s lost all her hair, but I’d rather it be from alopecia than from cancer. So even when she gets into the “i don’t like the kid i am” rut, I remind her this is the life God has given us and we are tremendously blessed and He loves her exactly the way she is.
Over the years, bringing along food for her wherever we go–whether across town, or across time zones–has become the norm. I don’t apologize for it, nor do I ask permission. She is MY CHILD and I am responsible for keeping her healthy and safe. If ever met with questions, I explain quite clearly the circumstance and keep moving. I’m still leery of her being in other’s care. Outside of family members, the only friends she’s been on outings/overnights with are 2 close friends of ours: 1 is a former daycare teacher and the other is a nurse. I will not risk my child’s well-being to make others, especially adults, feel comfortable. As parents we just have to remain vigilant as our child’s #1 advocate. So if that means explaining for the umpteenth time why she can’t have certain things to people who “mean well” or staying up late nights remaking a 2nd or 3rd batch of cookies/cupcakes for school, then so be it. My baby is absolutely worth it!!