Let me introduce myself…

10/25
2011

 

My husband and I had the privilege of being honored this Saturday, October 22, at the Food Allergy Initiative’s 4th Annual Chicago Benefit (www.faiusa.org). We were in the presence of so many incredible people and were moved by the generosity and empathy of those in our company. I wanted to post the speech I gave at the event because I think it will serve as a good introduction to my family and me.

…….  ……

“I started my first year of Allergy/Immunology fellowship in 2005, we had a brand new baby boy at home. Before I ended my first year of fellowship, we had three baby boys at home! If having 3 kids in 13 months wasn’t enough to make the remainder of my fellowship a challenge, one of the boys, Gino,* was showing early signs of allergic disease. He had terrible eczema that kept him up crying and scratching most nights, he would get hives constantly, and he vomited every single time he ate.

After months of denial, I finally had Gino tested for cow’s milk allergy. 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. The very field I was preparing to dedicate my whole life to was betraying me. That was the moment when the tables turned on me. I was on the wrong side of that appointment, a side I never dreamed I would be on. I was not the allergist that day; I instead became the mother of a child with food allergy.

 

Soon thereafter, I would become the mother of not only one but three children with life-threatening food allergies to multiple different foods including milk, egg, soy, wheat, green pea, beans, mustard, sesame, peanut, tree nuts, chicken, fish, shellfish, red grape, cranberry and banana. It probably would have been easier to tell you what they can eat!

I would like to share two stories with you that highlight the seriousness of allergic disease, the unexpected nature of reactions, the ultimate importance of epinephrine and the incredible need for a cure.

I remember it was a pretty summer afternoon and I was on call so my mom, dad and sister, who are an incessant support to us, stopped by to help. I was so excited to see the boys when I got home from work I let them eat dessert before dinner. I gave them each a tiny bite of a milk-free, wheat-free cookie I had made the night before. It was not even a minute after their first glorious bite when my mom nervously brought to my attention that Milo’s* lips and eyes were swelling and he had hives around his mouth. My heart sunk fast. I grabbed some Benadryl® and as I gave him a dose, my dad yelled out my name, and he said it in such a way that I knew something horrible was happening. Gino was lying still on the floor. My dad picked him up and ran over to me. When he handed him to me, I felt his weight. That is the strongest memory I have of that moment, his weight. He wasn’t holding any of it on his own, he was completely limp in my arms and when I sat him up and screamed his name to get him to look at me, his head just slumped forward heavy against my chest.

He began to look dusky and blue around his lips. I screamed for an Epipen, Jr®. And even though I can put teeny tiny umbilical lines into two pound babies without so much as a tremor in my fingers, with my own child, I was shaking so much that I could hardly remove the gigantic gray cap from the Epipen, Jr®. When I finally did, I put into his thigh with a thud. While I counted to ten, he began vomiting profusely. His nose was bubbling out mucous and he was turning more and more blue. I could feel myself losing him and I believed that he might be dying in my arms. Dying from a cookie that most of the world would find nothing but joy in. Dying from a cookie. Specifically dying from the egg in that cookie. A few minutes after the injection of epinephrine, his coloring began to return and I felt this overwhelming sense of relief and gratitude as he started to open his eyes again. That night in the hospital I remember crying and clutching to Gino for dear life and thanking God that I could.

We have unfortunately had many similar reactions to food in the past five years. Most recently our baby, Lucy, * had anaphylaxis within 30 seconds of drinking her first ounce of cow’s milk based formula at 4 months old. Her face began to swell almost immediately. She was retching and coughing. My ever-smiling baby was growing distant and weak. She was too small for an Epipen, Jr® so I immediately called 911. When we got to the ER, she began to have more difficulty swallowing and she was starting to drool.

The underside of her tongue was so swollen that it looked like she had two tongues, one stacked on top of the other and the back of her throat was beginning to swell so she had just a narrow passage through which air could flow. Two injections of epinephrine later, she started to look better, the swelling was going down and I could actually get her to smile and when she finally did smile, that was a smile I will never ever forget. It was a smile that brought us both back to life.

I share these stories to demonstrate the urgency that D.J. and I have to find the treatment for food allergy. We are not alone in this urgency; we are in the company of millions of other people. We want Gino to be able to eat the pizza at his friend’s birthday parties. We want Milo to be able to eat a doughnut in the morning when he spends the night at my parent’s house. We want Lucy to be able to eat cheese to her heart’s content. We want Sal*, our son without food allergy, to be able to share these experiences with his brothers and sister and by doing so, he will be able to carry less worry and less burden. We want a treatment for this disease so that all people with food allergy can eat what they want, when they want, wherever they want without the fear of having a fatal reaction. That is their reality and it is a reality that desperately needs to change.

FAI supports the research that will soon find the treatment for food allergy. With your generous donations to FAI, we are one step closer to this wonderful day. And when that day comes, and I believe it will, we’re gonna have one helluva dinner!”

…….  ……

One of our friends, who already knew about our children’s allergies, came up to me after the speech and said, “I knew the kids had food allergies, but I guess I really had no idea what it was all about.”  So it got me thinking…  As the holiday season approaches, families with food allergies do a whole lot of education.  Some family members clearly get it and go out of their way to keep the celebrations safe and there are, of course, others who just don’t get it… yet.  A family member of ours once said to me that she knew the boys couldn’t eat peanuts but then asked, “What about peanut butter?”  Education is the only good answer to this lack of understanding but it sometimes feels like we have run out of ways to educate.  Please feel free to use this post as a tool to continue these often-difficult conversations.  Sometimes using another person’s words takes a little of the burden off of you.  And sometimes a picture is worth a thousand words.

Please feel free to leave comments!

                                              *Names have been changed to protect children’s identities.

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51 Responses to Let me introduce myself…

  1. Christine says:

    Sarah, thanks so much for sharing your graphic but articulate accounts. It’s so helpful to have a credible resource like you and your family. Far too often I feel others look at me as the “unreasonably overly dramatic mom” when I try to gain accommodation at social gatherings. Perhaps by disseminating your post, I will encounter less resistance to my detailed inquiry into the many ways that my child’s food could become deadly. I hope you (and we) never have a nightmarish emergency like these again.

    • Sarah says:

      Christine, I really hope that sharing this post with people will take some of the burden off of you. It’s amazing how some people need proof. Well, for those who do, here it is. Thank you for your support and your kind words. I appreciate it tremendously.

  2. Paul & Suzanne Granoff says:

    Sarah and D J, You and your family are both amazing. What a lovely and exciting evening this past Saturday evening at Gala. Your speech at the Gala was inspirational and educational and provided one with an insight of your personal courage and dedication that you each day bring to protecting and loving your family from the threat of Anaphylaxis due to Food Allergies. Your speech was presented with passion and love for your family and was from your heart. This idea of your own website to educate other families about Food Allergies is a great idea and there is no one that will be able to be a more educated and loving champion for this cause. You are truly both Heroes and Champions !! With love and respect. Paul Granoff M.D. And Suzanne Granoff

    • Sarah says:

      Dr. and Mrs. Granoff, You have been such a big support for me over so many years now. Dr. Granoff, it is were not for you and the education that you provided to me in medical school, I may not have become a pediatrician and certainly would not have been as good of a teacher. You taught me that – through your patience, kind ways and dedication to your patients. Thank you for being there for me and DJ on Saturday night, what a treat for us! I look forward to dinner over the December holidays. All my Love.

  3. Steve & Dana Fitzgerald says:

    Your story is so important in that it gives the human side to what so many, many people (myself included unfortunately) ignorantly view as indulgent or overprotective – the true nature of this awful condition is very real and your story has helped us to understand.

    We are grateful for knowing your story and hopeful that a cure will be found in your children’s lifetime – and we will continue to support you and your mission in any way that we can.

    Congratulations on the start of this blog – it’s a wonderful way for people to share and understand and both Dana and I (and Olivia too) are blessed to know you guys!

    • Sarah says:

      Steve and Dana, Thank you so much for reading the blog and for your friendship. Thank you also for your honesty and your willingness to learn more about food allergies. It means so much to us and to the boys.

  4. guiseppina says:

    Reading this recent post brought back me back to the very beginning with my son. I could not believe that I what I was reading was someone elses experiences. The vary same experiences that my son has had too many times. I have felt so alone over the last 6 years; it was bitter sweet to hear this from another mother. Bitter sweet because, finally someone understands, but BITTER simply because I would not wish any of it on any child.

    • Sarah says:

      guiseppina,
      I feel the same way… Bittersweet. I am happy though that we found each other and that my posts can help you feel less lonely, a feeling that I have had so many times over the past 5 years too… even being an allergist, I still felt lonely and isolated. I look forward to keeping your company as we plow ahead on this road.

  5. Aunt Barb says:

    Dear Sarah & DJ,
    Uncle Dave and I are so immensely proud of you both. What a show of encouragement and compassion to all in need. I think your blog is a great idea, people gravitate to things that are relatable, sometimes words with the pictures are so powerful, as was your case. I pray for you and yours and all the little ones who are so affected by this. I think your contributions will make a huge difference in many, many lives. love~Aunt Barb

    • Sarah says:

      Aunt Barb and Uncle Dave,
      Thank you for reading my blog! I appreciate your words of encouragement… It means so much to me.
      Sarah

  6. Marisa Nachman says:

    Well written. Treatment is the key. Very real accounts.

  7. Dearest Sarah,

    We never really know why life unfolds in the way it does … especially at those dramatic and difficult turns in the road. That you should become a pediatrician specialing in food allergies only to become a mother of three children who have them is pretty mind-boggling. However, at the point that you decided to share your experiences from “both sides of the table” with the larger world, your story takes on much greater proportion and meaning. I know how proud your parents are of you, Sarah, but they better get used to “gettin’ in line” – I have a feeling your fan club is about to grow exponentially. I am proud to be among them. Keep up the good work, Sarah, and by the way, you are a wonderful writer!

    Love and best wishes to your entire family!

    Denise (Maria’s sister)

    • Sarah says:

      Denise,
      It means so much to me that you would take the time to read my blog! Thank you for your kind and encouraging words as well. It’s pretty cool to have a Bissonette in my fan club!!
      All the best to you,
      Sarah

  8. Renata says:

    This post brought tears to my eyes, as I remembered our terrible days of non-stop itching, bleeding cheeks, little forehead rubbed against the carpet and the screen door every time I had my back turned to my child, vomiting, and overall misery pre-diagnosis. Just like you, after the diagnosis we had a list of foods that were OK to eat that was way shorter than the one of allergenic foods. 3 years have passed and we have made great progress, but what a journey this is! As a parent, I can never relax. I can never stop worrying, watching, hovering over my child. Nevertheless, I believe that a cure is possible, and I hope you will be successful in finding it.

    • Sarah says:

      Renata, I am very glad those days are behind us. What confusing ones they were. Not that they are all that much easier now but they are clearer. Thank goodness. Thank you so much for reading my blog. I hope that you find it helpful and that it gives you some company when you need it. By the way, I love your email address. I’d love a perfume-free world! All the best to you and your family!
      Sarah

  9. Mike says:

    Hi, thank you for sharing your story.

    My wife has suffered with multiple allergies most of her life. She’s allergic to peanuts, tree nuts, coconuts, pumpkin, chickpeas, even buckwheat.

    Our 2 year old daughter is allergic to dairy, eggs and sweet potato. I remember the horrific day when we switched from breast milk to a milk-based formula, she broke out in massive hives all over her body. She was vomiting profusely; even her pediatrician was stunned.

    We started Stay Safe Card earlier this year because of the multiple food allergies in our family, ordering in restaurants was always a painful experience. My wife found a sample chef card from the FAAN site and improved on it.

    I hope you keep up the blog and keep up all the good work.

    • Sarah says:

      Mike,
      Thank you for reading my blog! I really appreciate hearing from you. You have definitely had plenty of personal experience with food allergy. I checked out your website and “liked” it on facebook! The cards seem really nice and look like they would be particularly helpful for those traveling. I wish you much success on your new business!

  10. Your story brought tears to my eyes. I think that your children are lucky to have you as a mother, though!

    • Sarah says:

      Thank you so much, Selena, both for reading and for your kind words. As you know all too well, you do what you do because the love you have for your children is so incredible. Checked out your blog just now, very nice! I pray that our kid’s next blood test numbers stop climbing higher and higher. Enough already! Hope you continue to read!

  11. Juliette says:

    WOW! This is a very powerful story that literally brought tears to my eyes and reminded me about why my company makes allergen free foods for kids. Both my kids have mild to moderate food allergies which led me into the world of foods withour the top 8 allergens, but also free of corn and dyes as well. After reading and hearing so many stories like yours and finding almost no foods that my kids could eat safely , my husband and I came up with our company, The Marvelous Food Company, which is dedicated to make safe allergen free foods for kids in a dedicated safe allergen free facility :-) Thank you so much for sharing your story with us :-)

    • Sarah says:

      Juliette,
      Thank you so much for your very kind words and for taking charge and starting a company that gives families like ours more food choices! I will definitely be checking out your company! Thanks for sharing! Please continue to read and share this blog when you can!!
      Sarah

  12. Such a breath of fresh air. That’s all I can say. Thank you.

  13. Oh! You are so right for the need for more education, more voices on the subject of allergy awareness. Thank you for sharing your story! –S

  14. Kayla says:

    Sarah,
    I’m in tears reading this post. It shows how serious this issue is. As a parent we feel helpless and I know I’ve done my share of “educating” ER professionals. That’s the place you go when you need help the most, the ER, and the dr.’s in my small town didn’t even know how to treat a reaction or how histamines and antihistamines worked. Helpless.
    My son is 2 now and is anaphaleactically allergic to trace Casein. I’m so glad I found your site. I pray every day for my son and God to take this cross away from us. May god continue to bless and keep you, too.

    • Sarah says:

      Kayla, Thank you for reading! I am always so disappointed to hear about these kind of ER experiences. I hope that they were able to learn from you. You have a nice blog! Checked it out! Love the tupperware basket!! May God bless you and your family too.

  15. Wilma says:

    Hi Sarah,
    I read all your posts and have been receiving your mom’s emails. Wow you have been pretty busy lately, but for a good cause.
    I know you are a strong woman and God will continue giving you strenght and wisdom to take care of your family.
    Miss you guys!

    • Sarah says:

      Wilma, Thank you so much for taking time to read and catch up on the boys! It has been a pretty crazy time… I remember when we first found out about peas and you and your mom were at the house. It just got worse from there! I hope that you are doing well. I miss getting pictures! Best, Sarah

  16. Charlene says:

    I just discovered your blog, and am sitting here sobbing as I read this post. As much as I like my daughter’s allergist, I always say that doctors just don’t understand what it’s really like living with food allergies. My biggest source of support and practical tips has come from other food allergy moms. I’m so very sorry you’ve had to experience all this, but as both a doctor and a mother, you have a wonderful perspective and the opportunity to influence positive changes. I am hopeful and determined that a cure WILL be found in our childrens’ lifetimes. Thank you so much for sharing your story and for the work you’re doing.

    • Sarah says:

      Charlene, It’s so hard for the doctors sometimes… for the exact reason that you stated… most of them just do not know what it is like, can’t know what it is like! (I guess luckily for them!) Before I had children with food allergies, I had no idea how tough it is, how pervasive it is, how scary it is. Now, I know. I am happy share my story because my story is really your story too, in so many ways.

  17. Erin says:

    Sarah,
    Unfortunately, I love your blog! I’m not a physician, but my husband is (he’s a Chicago-trained cardiologist), and being a physician parent is so trying. (I think moreso being a physician father and husband than mother though, lol). I just didn’t “get” it before my son was dx’d, and let me tell you, with the dairy….. dairy allergy does NOT equal lactose intolerance….seriously. (Eye rolling at lack of education). We’ve been pointedly not invited to bday parties bc “well, we knew Emery wanted pizza, cake, and ice cream”, (I wouldn’t have gone if I had to bring my son). My poor son isn’t 2 yet and is already getting alienated bc of his FA’s. It is scary, seeing the sweeping ANA and having to administer the epi is scary…. all of it is frightening beyond belief. Thanks for starting this! -erin

    • Sarah says:

      Erin, It is awfully scary. Friends can act really strangely about the children’s allergies. One of my friends actually told me she was too nervous to invite my kids to play because she was afraid that she might kill them…and she said that in front of them! We just have to keep our heads up, stay strong for our kids and keep having fun with them! Thank you for reading, Erin.

  18. Evelyn says:

    Thank you for sharing your experience. Anaphylaxis is indeed very frightening having gone through it myself. Though my son is somewhat slightly allergic to certain food, I hope that he will never go through what I went through. I would like to share with you the day I met Death and how I survived and am now living with a medical condition called Idiopathic Anaphylaxis:

    http://therighttobealive.blogspot.com/2011/09/day-i-met-death.html

    • Sarah says:

      Evelyn,
      Thank you for sharing as well. Idiopathic anaphylaxis is definitely a tough diagnosis but I love your positive outlook!
      Sarah

  19. liz says:

    I just experienced our second anaphylactic shock reaction with my daughter- she has confirmed allergies to milk and egg, but the candy she ate, did not list those as an ingredient- so now I am at a total loss as to what may have caused this- the ingredients were, dextrose, glucose syrup, malic acid, artificial flavors, magnesium stearate red 40, blue 1, yellow 5&6-
    The weird thing is, she has had candy with those ingredients before- like smarties, skittles etc.- I want to test her for all the ingredients in the candy, but my allergist says labs don’t test for those…
    your story is the first I have read that was written with such accurate description- I don’t have any close friends with kids with food allergies, so they just do not get it- thank you for creating this website…

    • Sarah says:

      Thank you Liz. I created this website for all of us. Forward this post to your friends, maybe it will help educate them on the seriousness and reality of food allergy without you having to be the one to explain it. Let me know if it helps.
      Your situation with your daughter is a tough one. I have had similar experiences. I ended up calling the companies to talk to them about any possibility of cross contamination on the lines etc. It is such a confusing time, I’m so sorry.
      Sarah

  20. Dana says:

    I just came across your website thru NoNutsMoms posting and had flashbacks to our own anaphylaxis experiences when I read your story. It’s unfortunate, but refreshing to have a community that understands the vigilance, preparation and proactive manner that we must live to protect our children. I thank goodness for the widened community support, new food companies and growing awareness that did not exist just a few years ago. Thanks for your sharing your blog!

    • Sarah says:

      Hi Dana,
      Thank you for your kind comment! I, too, am so thankful for the growing support that we are experiencing in the past years. Companies like yours help to make the burden of carrying medication with you everyday not quite as much of one. Your products are beautiful. Take care and keep in touch!
      Sarah

  21. Susan Hagwell says:

    Sarah,
    Your story touched my heart. Our little grandson has egg, dairy and peanut allergies. People just do not understand the seriousness of these. Please let us know where we can contribute to research to help eliminate these allergies.

    • Sarah says:

      Hello Susan,
      Thank you so much for reading. You are right, the seriousness of food allergies is too often underestimated. We need to keep the education going so that your grandson and all the other food allergic children are protected. FAI (Food Allergy Initiative) is a wonderful organization supporting food allergy research. I have a link to it on my website under “Media”. Check out their site and see what you think. It is very easy to contribute through the site or depending on where you live, they also have luncheons etc. that you could attend. Thank you again.
      Take care,
      Sarah

  22. Hello Susan,

    Thanks so much for reposting this blog entry to your Facebook page. My eldest son looked just like Gino’s pictures. It’s amazing to me how a mother’s instinct goes into overdrive to find answers when you know things just aren’t “right.”

    Things for my son weren’t “right” from birth. Finally at 11-months he was properly diagnosed with food allergies to: dairy (by ingestion and touch), eggs, peanuts and tree nuts. He added to his list this past summer sesame as well, he is now six.

    For all the Moms out there that are struggling and wondering…take that next step and find some answers. You aren’t crazy! Learning the diagnosis will still be a jolt, even when you suspect it. However, once you know, you are well on your way to healing, managing and learning to navigate your new reality.

    For Ammaria’s family and friends…blessings.

    Thanks for all you do Susan!
    Kristin

    • Sarah says:

      Kristin,
      Thank you for commenting and reading the post! You’re right… even as a pediatrician I so often deferred to the mother’s intuition… we usually know what we’re talking about when it comes to our children! I hope that you continue reading and sharing my blog.
      Take care,
      Sarah

  23. Stephanie says:

    This is a great post!

  24. Rebecca Kelley says:

    Reading your blog has been so healing. I have learned more from other FA moms than anyone else. And no one gets it like we do. I truly appreciate the time you take to share your reality. THANK YOU.

    • Sarah says:

      Rebecca,
      Thank YOU for reading and letting me know the impact that my blog has had on you. It is so important for me to hear because that is why I started this in the first place. For all of YOU! So you’re welcome, it has been a complete pleasure.
      Take care!
      Sarah

  25. RM says:

    Wow. I cannot believe how many allergies all of you deal with, with all of your children! I sometimes feel sorry for us with two boys with food allergies and intolerances (one is intolerant to dairy, the other has 6 food allergies but not life threatening. his dog and cat allergies are analphylactic, though.
    What an unbelievably scary experience to have your children have such severe anaphylaxis. You are such a strong mom, and I hope and pray all your kiddos outgrow their allergies and can have what they desire to eat one day. Thank you for sharing your stories.

    • Sarah says:

      Rebecca,
      Thank you for your kind words. It really is my pleasure to share these stories. I hope that they continue to help people on this food allergy journey.
      Thank you for reading,
      Sarah

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