author of Feeding Eden

A Review – Food Allergies: Traditional Chinese Medicine, Western Science, and the Search for a Cure

H Book CoverTen years ago I was drafted unwittingly into the ranks of the food allergy moms. Managing my son’s multiple anaphylactic allergies has been an uphill climb among landmines of questions: Why are there so many new allergies? Why aren’t our kids outgrowing their allergies? Why are food allergies becoming so pervasive … life threatening … scarily unpredictable? And then our plea: Why oh why can’t our doctors cure our children’s food allergies? In Henry Ehrlich’s book, Food Allergies: Traditional Chinese Medicine, Western Science, and the Search for a Cure, he weaves these questions into his detailed telling of the work of Dr. Xiu-Min Li and her quest to save patients from lethal allergic reactions.

We food allergy types could fill our bookshelves with cookbooks and lifestyle guides. But there aren’t any books written about the process of procuring food allergy treatments. Equally unique, the subject of Food Allergies: Traditional Chinese Medicine, Western Science, and the Search for a Cure, Dr. Xiu-Min Li, uses Traditional Chinese Medicine to address our distinctly modern challenge. Moreover, Dr. Li aims for the altercation of the immune reaction of allergic individuals. She doesn’t confine herself to the goal of conditioning her patient’s to tolerate food. She hopes to bring them a lasting cure. Her ambition struck me as a somewhat western “in it to win it” attitude. But then I found myself thinking, “What do I know? Maybe she can.” as Henry Ehrlich carefully walks his readers through case studies in which Dr. Li has systematically altered her patient’s reaction to food. By the end of his book, Henry Ehrlich writes Dr. Li’s scientific theories and practices into a story that reveals what her science may have the potential to do so.

Ehrlich walks his readers through the early career choices of a Chinese born, American trained doctor who begins her own journey by connecting the dots between her studies of the symptoms and treatment of parasitic disease in China to the increasingly prevalent symptoms of food induced anaphylaxis. Then, in a distinctly modern laboratory setting she then transforms mice – among the most food tolerant mammals – into her own case studies of peanut induced anaphylaxis. Author Henry Ehrlich calls Dr. Li a “Rosetta Stone” because she can think simultaneously in both systems and recognize the potential of thousands of TCM remedies for treating diseases of the immune system that defy conventional remedies, not just food allergies, but eczema and asthma, and potentially for autoimmune disorders.  While reading I was struck by the inherent logic of merging TCM with modern medicine and equally in awe of Henry Ehrlich’s tenacious abilities as writer. He distills complex scientific processes, translating each and every detail into language and constructs for patients, parents and doctors. After reading Food Allergies: Traditional Chinese Medicine, Western Science, and the Search for a Cure I felt I had been given the gift of the possibilities that lie ahead for my own child - an homage of respect from an author who understood that his readers had been waiting for this story of science to unfold.

Feeding Eden on Kindle at Last

I have a Kindle love story to share. It starts when I was a grade school kid and discovered that, for me, reading was better than anything else. My friend's parents used to tattle on me to my parents about my "dangerous" habit of walking down the New York City streets with a book open in my hands. (Yes comparative ironies abound in our great age of teenage texting.) The only thing better than a new library book was a Twix bar and new library book. And though I was able to restrain from unwrapping my snack on the way home, I just had to crack open the book.

The Kindle First Generation was released in November 2007. By spring 2008 I had to have one and once I did, it was even better than I'd imagined. Despite the fact that I was a full time mother of two and on the verge of signing with an agent for my memoir which I'd spent the previous four years writing, I still had a desperate want to read and somehow I did. But the fact that I didn't have to go to a bookstore or library or wait for the online delivery of a book; the fact that I could sample new titles at my leisure without bribing one of my child with a bag of pretzels just so I could stand in an aisle and glance at a few pages before deciding to pay what always felt like way too much money (and yes even as an author I stand by that last  sentiment) was my "Kindle sell."

So, four years and one more Kindle purchase later, when I published Feeding Eden, I was very unhappy when I was told a month before my "launch" that my publisher would not sign a contract with Amazon for Kindle pricing and therefore none of their authors would have rights to Kindle versions of their books. I did the sensible thing: I published my hardcover and waited. The short version of my waiting period is that it did not reveal many reasons for loyalty to my original relationship and so ... I asked for the rights to Feeding Eden to be reverted back to me.

So I'm tremendously excited to be sharing this link to Feeding Eden, on Kindle. And I think it would pair well with a Twix.

FABCon Part III: Muscle Mass

Food allergy parents share fantasies about their children. We dream - in various formats - of negative test results, positive food challenges, safety and freedom. My latest vision? My son Eden has grown into his last year of high school. After a through round of shooting basketball in a friend's backyard, a group of them walk to the local pizza parlor and share a pie. Eden has his auto injector in his backpack as always, but he doesn't hesitate before his first bite.

The latest statistics on outgrowth indicate that, for many of us, we won't reach our dreams that way. Treatment. Affordable and Practical Treatment. That is our Holy Grail. And of course, the other goal is to keep our children safe and emotionally and physical healthy until we get there. Food allergy Blogger Conference is a gathering born of Jenny Sprague's dream that our food allergy and the food restricted community at large will growing stronger both collectively and individually by coming together and sharing information regarding every aspect of our quest. It's that simple.

GORDY AND THE Magic Diet: A Review

Gordy And The Magic Diet written by Kim Diersen & April Runge and Illustrated by Carrie Hartman is written for any child in need of a restrictive diet. The main character, Gordon, has a "monster" growing inside him. This monster makes him feel a mix of emotional and physical symptoms, symptoms that any child with a medical issue will likely experience: "icky, confused, tired, stoning, witch, sad, angry" and just plain old "sick." This monster also shows up at the worst times (picnics, parties, school events) and makes Gordy miss fun things like 4th of July Fireworks and "his turn at the Piñata."

After a wonderfully realistic description of Gordy's visit for medical testing and diagnosis, Gordy makes his monster go away by sticking with a "magic diet." It isn't easy. In fact Gordy cheats with Grandma, who bakes him( in age-appropriate hyperbole) The Worlds Best Double-Fudge Chocolate Cake with sprinkles on top" and Gordy, feeling the consequences, deeply regrets it. Thus comes my favorite part, when Gordy "fights" his monster, pirate style, waving his "sword of strength." I love the message for my own food allergic son that his restrictive diet can be a power source, not a burden and certainly not a weakness. Children with chronic medical issues are so brave and smart. So is this book.

For more information see: http://www.gordyandthemagicdiet.com

About Kim Diersen: Kim Dierson knows first-hand the power of food.  Starting at a very early age, Joshua battled sensory integration difficulties, trouble regulating emotions, and significant developmental delays.  A gluten-free and artificial-free diet opened a whole new world for Joshua.  He has been on his “Magic Diet” for 6 years to help control the behaviors of Asperger's Syndrome, ADHD, and mood disregulation

About April Runge: April Runge's daughter Nevin (age 9 ½) suffered from intractable epilepsy. The doctors tried to tame the hundreds of daily seizures through various cocktails of anti-epilepsy medications that left her a zombie and shell of a child. After using the Ketogenic Diet for five years, Nevin is seizure-free, medication free, no longer on the Ketogenic Diet and has been released from her epileptologist’s care. Recognizing the power of food, the entire family continues to eat for good health.

“My Story” on PeanutAllergy.Com

I was happy to be approached by PeanutAllergy.Com for the opportunity to tell "My Story" about writing Feeding Eden. It represents a solid and inclusive community of allergy parents and individuals  Please share with anyone interested in sharing their own story of parenting and challenges....

Raising a Son with Multiple Severe Allergies: Author of a Food Allergy Memoir Shares Her Story

This article was written exclusively for PeanutAllergy.com by Susan Weissman, the author of "Feeding Eden: The Trials and Triumphs of a Food Allergy Family." Susan shares what inspired her to write a food allergy memoir and discusses how her memoir has helped other families with food allergies...

 

Forgetting, Remembering and Egg Free Challah

Wow. Didn't realize the Jewish New Year is in seven days until ... now - seven days before. Didn't realize I hadn't posted for almost a month until ... I went to write about a recipe for the Jewish New Year. This is how is seems to go for me: I write all the time because that's just what I do. Sometimes I write where no one can read. Sometimes I write notes or emails to my children and husband. And more often than is excusable, I write drafts of posts for this site and just forget to publish them. Of course I frequently forget a lot of other things too like where I put my mugs in the morning or defrosting ground meat in time to cook it. Currently I have a back dated interview on Parents.com that I've failed to post (but will!) plus a book review and a short essay style thing about one of Eden's recent reactions. Ready to go all month while I ran around with my family.

So in the spirit of this post I'm going to ask, "Oy, what's a busy mom to do?"

Get organized I suppose. And in the meanwhile share the eggless challah recipe that I swiped off Veg Kitchen and created by Rachel Ornstein Packer. Looks easy and fast enough that I may even get it done in time for holiday dinner.

Update on School Access to Emergency Epinephrine Act:

U.S. House of Representatives Passes School Access to Emergency Epinephrine Act
Legislation Could Save Lives in Schools Nationwide
FOR IMMEDIATE RELEASEMcLean, Va. (July 30, 2013) - The U.S. House of Representatives voted Tuesday to approve the School Access to Emergency Epinephrine Act (H.R. 2094), important legislation championed by Food Allergy Research & Education (FARE) that will help protect students with food allergies.

The bill, introduced by Rep. Phil Roe, M.D. (R-TN) and House Democratic Whip Steny Hoyer (MD), encourages states to adopt laws requiring schools to have on hand “stock” epinephrine auto-injectors, which is epinephrine that is not prescribed to a specific student but can be used for any student or staff member in an anaphylactic emergency. Anaphylaxis is a severe allergic reaction that is rapid in onset and can be fatal.

“We applaud the House for recognizing the need for schools to be prepared to protect students with life-threatening food allergies by passing this legislation, and we thank Dr. Roe and Rep. Hoyer for their unequivocal support,” said John L. Lehr, chief executive officer of FARE. “This is a tremendous victory, but we still have work to do to enact this legislation. We look forward to working with our champions in the Senate, Sen. Richard Durbin (D-IL) and Sen. Mark Kirk (R-IL), so that this legislation can be approved and sent to the President for signature.”

About half of states have laws or guidelines in place allowing schools to stock undesignated epinephrine auto-injectors. The proposed federal legislation would provide an incentive for states to require schools to stock epinephrine.

In addition to FARE, the American Academy of Allergy, Asthma & Immunology, the American Academy of Emergency Medicine and the National Association of Elementary School Principals have endorsed the School Access to Emergency Epinephrine Act.

FABCon Part II: We Want You!

One reason I love teaching the middle school age range is that early teens are generally too young to feel apathetic about their learning, yet they are old enough to have very interesting things to say. I've always held to a teaching creed that goes something like this: "I may be the person standing in the front but that doesn't mean that I am, at every moment, the smartest person in the room." I feel it's crucial for "experts" to remain open to the potential for expertise around them.

I've had the privilege of learning so much from my students. They have shared things like . . . biographical tidbits about my favorite Y/A authors, tragic and wonderful aspects of their lives in other countries, and up to the second pop-culture-isms and slang.

Similarly, whenever I've been invited to hold a reading of Feeding Eden or, to host a discussion surrounding food allergies, there are moments when the attendees in the room bring a particular view or experience that adds to everyone's understanding of their own life with food allergies.

So whether or not you blog, or advocate, or bake or advise under the global-sized umbrella of  Food Allergies, you are needed at the FABCon / Conference. Our community thrives on our diversity. Among the panels will be:

HONE$T PAY~ Monetizing a blog: How to make money with your blog-and feel good about it.

The Art of Recipe Development: Join our successful cookbook authors as they share their tips for creating a recipe, for your blog or your cookbook!

SELF-PUBLISHING: Whether you are writing a memoir, a cookbook, or a children's book; How do you get self-published? and Why you should! How to get your work onto the page and into the hands of readers!

Nitty Gritty- Make it Pretty: Blogging tips and tricks to personalize your blog, simple coding tricks to add personal touches and make it shine! Information for novice and amateurs! Whether you use Blogger or WordPress!

Reading Labels and Avoiding Contamination: What the labels, mean, what to look out for, and understanding manufacturing practices.

After the Diagnosis: ages/stages & social aspects. What do you need to be doing after the diagnosis? What is the follow up? What are other concerns as your child ages?

Facing Adversity with a Smile:  When life gives you lemons~ You start a blog, start a business,  write a book ~How to see the many blessings in the burden.

EDUCATION:  Learning the school's responsibility and the student's rights. What you need to know and do-to ensure safety and inclusion, forming a successful relationship with your child's school.

504 PLANS: What are they, How do you get one, How do you make sure yours covers everything- and What happens when it is not followed?

ALLERGY TESTING: Experts share their knowledge and advice about what you need to know when it comes to getting allergy tests done, and how to make sense of it!

ANAPHYLAXIS: Experts share their knowledge about managing anaphylaxis.

GETTING HEARD (How to be an effective advocate):  by media, by other bloggers, by publishers, etc. We must navigate advocating for our children's health with family members, schools, medical professionals. How do we get our messages out, in a positive way, so people listen- gaining allies not alienating them.

Moreover from July 1, 2013-July 31, 2013 tickets are $200, from August 1, 2013-August 31, 2013 tickets are $225.  From September 1, 2013 onward, a ticket will be $250. for the event! PURCHASE HERE.

 

 

Asthma and Allergy Foundation of America Review of Feeding Eden

The following review was written in Asthma and Allergy Bulletin of the Asthma and Allergy Foundation of America, New England Chapter, Spring 2013.

Share the Trials and Triumphs of a Food Allergy Family

Reviewed by Rose Ann Miller

I am almost nervous to review Susan Weissman’s Feeding Eden because I worry that I will not be able to fully and accurately express just how good, how helpful, and how meaningful this book has been to me.

When my five-year-old son was diagnosed with severe food allergies at 18 months of age, I felt completely untethered. It’s scary enough to bring up a child in this world. What with diapers, feeding schedules, booster shots, and teething all parents have their hands full. But then, to discover that your child has not just an allergy but also a life- threatening allergy made me feel vulnerable and alone. And the truly scary thing is that this reaction—one that mimics having the wind knocked out of one’s chest—is natural. How can a mother encourage her child to grow and explore the world when that world, the one that lies just beyond the window, is toxic to him in so many ways?

My perspective and my feelings changed once I read Weissman’s tour de force Feeding Eden. Not only is the book well written and engaging, but Weissman speaks to parents and caregivers of food allergic children. And she speaks to us as a friend. You get the sense that you and the author are sitting cozily, side-by-side on the sofa while she relays her journey through food allergies with her son, Eden. The author really lets you into her world; each story is intimate and revealing. In fact, Weissman was so forthcoming and so open about her feelings that I almost wanted to lean over and say, “wait, let me share my story too.”

Weisman’s story begins when Eden is just a baby and has horrible eczema. Actually horrible is a misnomer. Eden’s eczema is nightmarish. He also has trouble eating, sleeping, he cries a lot, is clingy... the list goes on. Feeding Eden chronicles Weissman’s journey to find the right pediatrician and allergist for her son. She has a lot of trial and error until she finds a correct diagnosis for Eden and the right doctors for him. While Weissman finds the right doctor, she explores and relays the medical side of food allergies, but in a way that’s easy to understand. She also takes us inside her family’s kitchen, sharing her knowledge about recipes and how to navigate holiday gatherings, birthday parties, and school celebrations. Reader: I cried at Weissman’s stories. The day-to-day situations that Weissman describes are so real to the parent of a food allergic child that I wept with joy that there was someone out there who understood my heartache for my son and his situation.

Weissman has a loving husband, as do I, and another child without food allergies—me too. She relates how her family has reached a stasis when it comes to food. Everyone may have a sandwich for dinner, she says, but not everyone’s sandwich will look the same. When it was time to make a birthday cake for Eden, Weissman relentlessly and tirelessly makes cake after cake until, finally, she finds one that’s right.

Throughout Feeding Eden Weissman is confessional—even delving into dark places. She bravely admits (something I’ve thought plenty but never had the guts to speak aloud) that she almost feels calmer when Eden has a reaction because she can actually do something. What she means is something that I’ve felt too: I worry. Every moment my son exists is a moment when he could, realistically, have a reaction. While he is not consciously aware of the risks at this age, I am. However when he is having a reaction (my son, like Eden, has had anaphylaxis a few times), the epinephrine has been used and he’s been fine.

Weissman is neither hyperbolic nor belittling about Eden’s situation and the day-to-day challenges. She tells it like it is. I cannot say enough good things about Feeding Eden. Actually, the only thing I didn’t like about the book is that it had to end.

I encourage you to read Feeding Eden. I know you will benefit from Weissman’s candid retelling of her own difficult story. To me, the book was a lifeline that I am still clinging to, still savoring and appreciating.

 

Food Allergy Blogger Conference Part I: The Moment of Obligation

I believe a game-changing food allergy event will happen this November 2013 in Las Vegas. It's called FABC Food Allergy Blogger Conference. Jenny Sprague, food allergy advocate (see her resource site Multiple Food Allergy Help,) mother and my new role model is the originator of FABC. How is FABC different from previous FARE conferences and events? FAB represents the first time that our food allergy community will gather in mutual support without affiliation or obligation. Yes, some attendees may participate by walking in the Las Vegas FARE Walk, yes we will educate ourselves on the latest food allergy medical advances and yes we will bond over the commonalities in our challenges. But we will also have an opportunity, as individuals, to enrich our unique forms of food allergy advocacy by sharing what we do and how we do it. We will match faces to names and have generous time to truly connect as people, parents, doctors, researchers, writers, CEO's, chefs, bakers, musicians, and more.

Jenny Sprague has envisioned multi-faceted, multi-dimensional event with speakers, panels, fun and safe food. (More specifics will follow in future posts.) As someone particularly daunted by event planning of any kind, I was facinated by Jenny's "moment of obligation" - - the steps leading up to her decision to take on this incredible task instead of waiting and wishing that someone else could make it happen. I asked and was planning to paraphrase her answer. But after reading her honest account I've decided that her rendition reflects both Jenny's infectious courage and our shared need for personal connection. According to Jenny the story unfolds roughly like this:

I went to BlogHer in NYC last August, and Loved it, but the whole time I felt like I wanted THAT experience but with all my food allergy peeps! Then we went to the Sanofi summit, and shortly after that I went to the Mylan summit. The culmination of these events, getting to meet some of the people I have followed for years, and now come to call friends, inspired the idea. I hinted to Sanofi and to Mylan that we needed these educational summits- but for everyone- [neither took the bait]

The night the Mylan summit ended, in NYC, in February, Caroline Moassessi and I dined together. It was during that meal I shared my idea about a large food allergy blogger conference. She thought this was a really good idea, and became excited as we discussed the idea and potential. She said "You should DO this!" Which until that night had NEVER occurred to me. I kind of laughed it off, but the seed had been planted.

A few days later I shared the idea with Elizabeth Goldenberg, with the idea that she is smart, and level headed, and would tell me its a foolish idea- but she didn't! She too loved the idea. I then spoke to Colette Martin, expecting her to tell me it was a pipe dream- but SHE didn't! Each person Loved the idea, the desire for us all to come together, to learn, share, hug, meet!  I also brought the idea initially to Elisa Camahort-Page, a co-founder of BlogHer to see if they had interest, She told me they were booked for this year, but she generously offered to be an adviser and has been generous in her guidance and help! SO with that, the dream became my project! 

"Project" indeed. Jenny has embarked with the purest of motives. To me, the FABC conference is not about showcasing ourselves as much as it is about emulating the values set forth from Jenny's conception: What can I do that needs to happen? More to come on this undertaking and it's implications for progress and change in our growing food allergy community...