The tables have turned.

10/20
2011

 

I was not wearing my white coat or pager and I didn’t have a stethoscope hanging from my neck.  I wore jeans, a simple black sweater and had an overstuffed diaper bag slung over my shoulder.  I was not the allergist that cool November day.  I, instead, became the mother of children with life-threatening food allergies.  As the diagnosis fell from my allergist’s lips, the same diagnosis that so often fell from mine, it struck me how it felt on the other side and the strike was powerful.

I went from handing out superhero stickers to my little patients after their skin prick testing to rewarding my own fiercely reluctant boys with superhero figures after the same prick test. I went from calling parents with their child’s lab results to waiting for that same single call for numbers that now somehow meant the world to me.  I went from handing a patient’s parents a food avoidance sheet to standing in a grocery store with that same list and sobbing because I had no idea what I could buy or how I was going to cook for my family.  I went from diagnosing anaphylaxis based on clinical history and lab results to jabbing an Epipen Jr® into the thigh of my own limp and dusky one-year-old cherub after he ate a single bite of cookie.

I was not expecting to be on this side of the table.  This side of the table is top 8 allergen-free, plus some. This side of the table often eats alone.  It is worried but brave. It is hindered but disciplined. It is threatened but confident. Although I would have preferred to stay seated on the other side of this table, I am also blessed to sit here in the company of other food allergy families.  This side of the table would enable me to obtain an understanding that I could never have otherwise known completely.

Now, my friends, I get it.

So please, pull up a chair and sit down with me.  I know we’ll have a lot to talk about.

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52 Responses to The tables have turned.

  1. Mom & Dad says:

    Dear Sarah,
    We want to tell you and DJ how incredibly proud we are of your courage and unwavering commitment to your family and to all families that share in your unique experience. It is through this commitment that you make such a wonderful and positive difference to all you come in contact with. Congratulations on this beautiful and important website. We love you and stand by you always!
    Mom and Dad

    • Sarah says:

      Mom and Dad, I don’t think I would have known how to handle the many burdens we carry if I didn’t have your shining example. Having you as my parents has given me the strength to keep focusing on making things as good as they can get. Thank you for that. Thank you for everything.

  2. Marisa Nachman says:

    My heart just jumped.

  3. shawn says:

    I bet your family is glad to have you on their side of the table.

  4. Tim says:

    I am not sure whether to describe your plight as ironic (because you were to be an allergist before you even knew what God had in store) or suitably fateful. What I do know is that you are the perfect person to be positioned in this endeavor because of your passion, intelligence, and determination. Those with similar situations will only find your first-hand experiences validate your cause even more. I eagerly await the first chance I get to refer people to your site for that little bit of information/help, often relief, that people seek when dealing with tribulations of children with allergies. As always, best to you, DJ, & the little ones. May your passions play out in these pages!!!

    • Sarah says:

      Tim, thank you a million times over for your kind words. They further inspire me to tell our story and tell it well. I hope you can find other families who may find this blog helpful!

  5. Fred Hasemeyer says:

    Hi Sara,
    I too have a son with a food allergy, Peanuts to be exact. Eating has changed, reading labels and trying to find foods can be difficult. It seems that everything is made on equipment or made in a facility that also processes peanuts. I am starting to believe companies apply the labels very liberally. We are still in the discovery phase of Ryan’s allergies. We still have more testing to complete. I will continue to read your website and I sure it will tremendously helpful.
    God Bless
    Fred Hasemeyer

    • Sarah says:

      Hi Fred! It’s been a long time! Bummed to hear food allergy affects you and your family as well. Ingredient reading and labeling is such a tough part of our job. It is something we find extremely frustrating too! I hope that you and your family find this blog helpful. Fingers crossed the rest of Ryan’s testing turns out well.

  6. Jen Kim says:

    Gorgeous website SBR!!!!! Can’t wait to read more! Congrats! xoxo

  7. Guiseppina says:

    I cried knowing the feelings and challenges you are facing. I am confident that if I can triumph over the same challenges so can you. My son was diagnosed with the top 8 plus so many more. There is lots of great information out there, and many allergen free products that will help your child lead a heathy and happy life with allergies. It will be emotionally challenging too, for the both of you. With lots of love, honesty, and care, life is and will be good.

    • Sarah says:

      Thank you so much for your kind words. The past five years have definitely been challenging and overwhelming at times but thank goodness for the wonderful and supportive people we meet along the way. Hopefully we can be good company for each other!

  8. Jen says:

    Sarah,

    Your web site is such beautiful extension of the commitment and dedication I already knew that you possess. I look forward to many more years of working together for a cure – ok, hopefully not many more, but a few more…because I truly believe a cure is within our grasp. I hope that this web site provides help to parents like us who get the diagnosis and then need to find the “new normal” in their lives. FAI mentions this in today’s new e-blast. Please let me know if there is anything else we can do to spread the word. Blessings, J

    • Sarah says:

      Jen, Thank you so much for all of your support and friendship over the past year! I agree that I hope the treatment for food allergy happens quickly but I hope that our friendship is lifelong.
      Sarah

  9. Jackie Pongracic says:

    Sarah,
    Congratulations to you on your new venture! I am confident that your blog will provide helpful information and comfort to families coping with food allergy. I look forward to more. Let’s get the word out about food allergy!
    Best wishes,
    Jackie

    • Sarah says:

      Jackie,
      If I didn’t have the guidance, education and friendship that you have extended to me over the past years, I wouldn’t have had the courage or ability to do so much of what I do. Thank you.
      Sarah

  10. ajasfolks2 says:

    Saw link to your new blog shared at our support forum and truly appreciate what you’ve written and shared.
    Tell me what you think. Might it be a useful tool in medical school to have an “exercise” or assignment to be something like this?
    – “Spend a month as an individal with anaphylaxis to XYZ allergen . . . from diagnosis to practical application in real life.” Have the student journal all that is eaten or not eaten, how he/she arrives at his/her “safety zone” . . . and ALL of the day-to-day details of trying to STAY alive with life-threatening food allergy. Could exercise be further enhanced with sudden “digital ” anaphylaxis sent to the student (at any hour of day/night) that indicates the student must use the epi-pen (correctly) and then some sort of mock-up follow up in an “emergency room”.

    Another interesting exercise might be for allergist/pediatrician-going-to-be to have to be “in the weeds” in mock school setting in some way and have to navigate ALL THAT with regard to having life-threatening food allergies.

    I’ve just really been thinking about this a lot lately — especially as our family interfaces with many physicians who also are not really understanding of what IS and IS NOT going on in schools so far as LTFA management — and mismanagement (from misinformation to disinformation and so on).

    Again, thank you for your blog. Looking forward to following it.

    • Sarah says:

      Yes! With the incredible increase in food allergy, I think that the learning curve with medical students and with practicing physicians has to be steep. I have witnessed first hand exactly what you are talking about… I have had another physician question whether or not my child’s food allergies were real! He only gained an ounce of empathy after I showed him a picture of what my child looked like during a reaction.
      As an allergy fellow, I tried an exercise similar to what you have described with the new interns on my rotation. I provided them a list of of foods to which they would be allergic for the next two days and asked they strictly avoid them by reading labels, avoiding foods that were unlabeled (and, yes, that included the muffins at morning report) etc. I remember one intern asked me if she could take a few hours “off” because she had a party that evening. I encouraged her not to and the next day when we met, she told me she was “exhausted with dealing with food all day”. So, yes, I think it can be effective! LOVE idea about the “digitial anaphylaxis” as a tool to remind them the importance of epinephrine. When I get my feet back in the hospital, you can be assured that I will continue to implement these exercises. The world needs more empathy/education regarding food allergy and anything we can do to build that, I’m up for!! Check for new post, hoping to get it out today!!

  11. sarah says:

    thank you so much for putting your website out there. as a working mom of two, one anaphylactic to peanuts (the other younger one i’m too scared to find out), i am grateful everytime a parent of a food allergic child shares their story and their personal wisdom. each time i meet a parent of a newly allergic child, i enjoy sharing resources with them. same goes for parents of non-allergic children who want to know what they can do to help and support their allergic friends. Your website has been personally insipring to me as well. months ago, i went as far as getting a domain name, starting research, collecting my resources, and journaling with hopeful efforts to get it out there one day as a helpful online resource and perhaps a bit of therapeutic release for me as well. instead, i’ve found myself bemoaning how “busy” i am, or maybe just to nervous to put myself and my family’s stories out there. so i thank you for quietly giving me the encouragement and inspiration to do so. see you in the blogosphere and keep up the lovely work you seem to be doing. best, sarah

    • Sarah says:

      Sarah, Thank you so much for your kind words and for reading my blog. I am so happy it has had a positive influence on you. You are busy!! Take small steps. Feel free to post comments on my blog to share your story until you have your site up and running. Happy and safe Halloween to you and your family.

  12. Kathy Kosmala says:

    Sarah,

    What a beautiful, selfless expression of a mother’s love! Your children are so blessed to have your constant diligence and clinical knowledge. As a mother of child with food allergies, I am grateful to have addtional information from a reputable source!

    -Kathy

    • Sarah says:

      Thank you so much Kathy. Your words mean so very much to me. I hope that you continue to find posts that are meaningful and helpful to you. If there is anything I can ever help you with, let me know!

  13. Mike Messaglia says:

    Sarah, great job on the website. Your willingness to share your story will ultimately save lives. The education being provided will make the lives of those living with food allergies better. No one is more qualified to spread this message than you. I’m glad you are up to the challenge. You are my hero!

    • Sarah says:

      Mike, Thank you so much for taking the time to read this blog and for your very kind words. It means so much to me. We miss you guys and would love to see you soon!!

  14. Tori says:

    Hi Sarah,

    Thank you for this wonderful site that you have created! As a Speech Pathologist working with young children, I have encountered many children over the years with food allergies and now have this blog for their families to visit. You are an amazing person who will continue to inspire, reassure, and support many families through your site.

    -Tori

    • Sarah says:

      Tori, It has been way too long since we have seen each other! I hope you and your family are doing well. Thank you so much for reading my blog. I hope that you can share it with families and that they find it helpful and encouraging. Be in touch!!
      Sarah

  15. Suzanne says:

    Thank you! I can really relate to your experiences. I am a mother of 2 children with different multiple severe food allergies (peanut, tree nut, egg, dairy, wheat). Your story of your baby’s reaction to cow’s milk is very similar to how we found out my youngest had a severe allergy to dairy when he was 6 months old. I look forward to reading more of your posts!

    • Sarah says:

      Hello Suzanne, Happy you found my blog! Having kids with multiple food allergies that are different is so tough! When we are out, I may let some get pop and the others get milk, and then I have to ask the milk drinkers, “You’re not allergic to milk, right?” It can definitely get complicated. Thanks for reading!

  16. “This side of the table often eats alone.” How true. I know I didn’t truly understand what having allergies meant until my own diagnosis. –S

    • Sarah says:

      Shanon, It’s so true that is hard to fully understand how hard the food allergic life can be… and then, you’re living it. Best of luck to you. Thank you for reading. I’ll be following you as well!

  17. Jennifer says:

    First, as a mom dealing with food allergies (as well as eczema and asthma) I love your blog concept. I really look forward to following your personal stories.

    Also, congrats on your top 25 Food Allergy Mom Blog nomination! I’m listed as well and it’s given me an idea. I’m starting a blog hop for anyone dealing with allergies, eczema, or asthma – adults or parents helping their children. If you’re interested in joining, please visit my page and post a comment that you’d like to join. http://itchylittleworld.wordpress.com/blog-hop/

    Hopefully we can create a circle of blogs to support each other in battling these conditions.

    Thanks!
    Jennifer

    • Sarah says:

      Jennifer, Thank you for your kind comments. And what a wonderful idea. I will definitely visit your site (again) :) Thank you! Sarah

  18. Laurie says:

    I cried when I read your story. I am so thankful for Mothers like you who write about your struggles, because it helps Moms like me who feel like they are alone with their childrens allergies. I have two children with severe anap.latex allergy and they too can eat so little.They are allergic now to the top eight plus corn, potatoes, most fruits and veg.. etc. I make everything they eat and it makes it hard to feed them most days . Thank you for such an inspirational story!!
    Laurie

    • Sarah says:

      Laurie, This is exactly why I decided to share my story…I knew there were other people like me out there who need a friend, so to speak. It is such a difficult disease to cope with because it is constant, you have to think about it and deal with at least three times a day (not including snacks that in our house seem to be as big as meals!). If it makes you feel any better, we had the dinner dilemma tonight. Take care and I look forward to hearing from you again soon, Sarah

  19. Charlene says:

    We never forget that moment of diagnosis, do we? I remember feeling devastated, but sat there solemnly nodding and trying to absorb and retain everything the doctor was telling me. “Don’t give your daughter anything “made in a facility” or “on shared equipment” she instructed. OK, I remember thinking, that sounds simple enough. Hah! I’ve often thought of contacting that doctor again and asking if she knows how hard it is to even obtain this information from most manufacturers, or if she cares how it felt to be told I was worrying too much during a later visit. I would never wish this life on ANYONE, but it’s somehow comforting to read your words and know that you really truly understand now. God bless you for sharing your story.

    • Sarah says:

      Charlene, No, you can’t ever forget that moment. It is a moment that keeps playing over and over in my head. It is the answer to the question I find myself frequently asking, how in the world did we end up here? It is such a difficult road but we can do this!! We have to! We will be a great support for each other! Best, Sarah

  20. hannah says:

    i just found your website. read some posts. and cried. being a parent of kids with life threatening food allergies is so stressful and many times so sad. and i feel like nobody else gets it. thank you for sharing your stories.

    • Sarah says:

      Hannah, I’m so happy you came across my site. I started it for exactly that reason… so my readers can feel like someone else gets it. Thank you for reading and commenting. I hope you continue to read. Happy New Year! Sarah

  21. Cindy in GA says:

    I just discovered your blog when someone mentioned it on the Kids With Food Allergies forums, and I’m so glad that I did. My 2 year old was diagnosed with peanut & tree nut allergies last spring, and I still get emotional when I read others’ stories. This post made me teary – somehow knowing that others have felt these same things makes it all fresh again.

    I’m trying to become so educated on the topic that I’ll feel more confident – reading all that I can. Thanks for sharing your story.

    • Sarah says:

      Cindy,
      I am also so very happy that you found my blog! In your quest for education on food allergy, please make sure you read the post, The Science of Anaphylaxis. It will hopefully give you a good start in understanding how an allergic reaction evolves and why epinephrine is so helpful in the treatment of anaphylaxis. Take care, Sarah

  22. Stacey says:

    Wow! I cried as I read this post. Your words ring so true for so many families. Our 4yr old son has ana to milk, eggs, peanuts and tree nuts, along with FPIES to soy. Your blog floods my mind with the memories of his first FPIES reaction at 10 weeks old, the ER/hospital doctors not believing me, until I convinced them (after 2 days in the hospital) to give him soy formula again. Again, my son went lifeless. His ana started once he was eating food, though he had symptoms through my bm. His ana reactions are memories I try to suppress also.

    I am so thankful that we have a tremendous ped and pediatric allergist on our side. I sill think they could benefit from your point of view, as I know they don’t really think about how it affects us everyday. Thank you for your insight.

    • Sarah says:

      Stacey,
      Thank you so much for your very sweet words. Two of my children have FPIES as well. My son has FPIES to soy and in fact, just failed his challenge a few months ago… a huge disappointment. When he started having IgE-mediated reactions as well, I was beside myself. We certainly have allergic families!
      I hope that you continue to find my posts helpful and that you continue to share them as you can.
      Take care,
      Sarah

      • Stacey says:

        Does your son also have IgE-mediated reactions to soy, along with FPIES? My son’s soy RAST is now in the 90′s, but was negative when he was diagnosed with FPIES. The allergist has no idea if he still has FPIES, just IgE, or both. :-( He will be doing a soy oil/lecithin challenge (hooked up to IV’s of course, because of FPIES) in March. I would love to know more about your experience with FPIES. When he had his first ana reaction, I thought there was NO WAY I could have a kid with IgE and non-IgE allergies. Sadly, I do.–but he is an amazing boy! ;-)

        • Sarah says:

          Stacy,
          My son does not have IgE-mediated soy reaction, only FPIES. (He has IgE-mediated reaction to egg.) Failed an FPIES challenge a few months ago but he does eat products that contain soy oil and soy lecithin without any adverse reaction. I hope that your challenge goes smoothly, adding these ingredients opened many doors for us! Please let me know how it goes!
          Sarah

  23. Joy says:

    This is an amazing post, thank you for sharing your thoughts and experiences. I am in clinical dietetics, have a son with IgE to eggs, and 2 sons with milk protein intolerance; and thought I understood allergies but never knew how much I did not know until my youngest of 4 began to have FPIES reactions. I love this- may I share it on my blog?

    • Sarah says:

      Joy,
      I would be honored if you shared my site on your blog! Boy, we’re in a similar boat, hey? 4 kids, all kinds of allergic food diseases? It’s nice to know we’re in this together. Hope all is going well. Take care of yourself and thank you again!
      Sarah

  24. Lisa says:

    Sarah,
    Your blog is beautiful and inspiring. I am so touched by it and so glad to have found it, and to connect with you! Keep up the amazing, important work.
    Lisa

    • Sarah says:

      Lisa,
      Thank you very much for your kind words about the blog. And I am so glad to have connected with you! Hope to be able to meet in person someday! Let’s be in touch,
      Sarah

  25. Paula says:

    I am thrilled to have found this blog! I sat propped up in bed today (due to gut percolating from food allergies) reading, when the mail came and my husband handed me my first Allergic Living magazine with your article. Half way through I was tearing up. I could identify with your situation–I am a nurse who has been on both sides of the table, and the needles & syringes. I have allergic children (now grown) and in recent years my food allergies have changed. The past 3 years I have been spent searching for a needle in a stack of sewing pins. Haven’t found it yet, but have several doctors searching with me. I feel that this blog will help me to not feel so sad and alone on this journey. Thank you ever so much! I look forward to reading all the posts, after I go find another Kleenex :*)

    • Sarah says:

      Paula,
      Thank you very much for taking the time to read my article, as well as visit my blog, and thank you for taking the time to write. I am so happy that this blog helps you to feel less alone because you are not alone in this journey. There is an entire community of people working through the same type of issues that you are. I am so happy that you joined us! Hope you didn’t need too many more kleenex!
      Thank you again and please keep in touch!
      Sarah

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