Your Child Has A Severe Allergy. No thanks, where can I return it?

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#FoodAllergyFun

I am lucky to be able to say that I discovered our son’s allergy calmly and without significant trauma.  I realize that many other families did not find out as I have and that still others face their own great challenges that are completely unrelated to food allergies.  Allergies just happens to be our challenge.  I take it seriously…but I always find a reason to laugh and smile too.

I am not an expert on food allergies.  I learn something new with each new experience and I look forward to sharing our journey and to hearing about yours too.

Our son’s food allergy journey began when he was 5 months old.  One ordinary day while he was napping, I had a snack of banana slices with peanut butter and a large glass of water.  I had barely cleaned up when I heard the bear cub stirring in his crib.  I went in to get him and greeted him with a great big smile.  I scooped him up into my arms and gave him a kiss on his tiny cheek.  Within seconds, my sweet cub had a red rash, hives and swelling in the spot that I had kissed him.

Working as a pediatric feeding specialist and having knowledge of food allergies, my clinical brain new right away what was happening.  I knew that the only thing different about my kiss that moment was that I had just eaten peanut butter and my eyes widened in disbelief.  As I simultaneously snapped a photo of his face and called the pediatrician, I repeated the same phrase silently over and over in my mind: “please no.”   Our pediatrician saw us right away and monitored our son whose symptoms did not escalate pass that point, but we discussed at great length that if a mere kiss had that potential…it was not a good sign.  That visit was cub’s first diagnosis of peanut allergy.

I threw out every peanut and tree nut in the house that night.  I called every family member.  I searched far and wide for a reason.  Where is the gene?  Where did this allergy come from?  Neither my husband nor I have this allergy.  There are no peanut or tree nut allergies that I could track down in either of our extended families either.  I was at a loss, but I knew we had to protect our cub and I do.

When our son was finally old enough for more reliable testing, we tested.  Our pediatrician ordered the RAST (radioallergosorbent test).  It is a blood test that determines substances that a person may be allergic to.  When that came back positive for peanuts, we wasted no time and went to see a allergist.  At the allergist, we did a skin allergy test which determines an allergy by the reaction from the person’s skin.

The moment that the peanut oil brushed the surface of our cubs back during his skin testing his body reacted in protest.  This time immediate rash, hives rapidly spreading over his tiny core and swelling.  He reacted so quickly that he could not sustain the full test.   The allergist immediately cleaned the oil off and treated his symptoms.

Our allergist told us that our sons allergy was severe and began firing off more information than I could honestly process at that moment.  My mommy brain trumped my clinical brain that day.

When I asked if our son would out grow this allergy, our allergist responded with, “well, it’s not likely…only 1 in 5 out grown this allergy”.  He told me he would be available by phone for questions and he sent in nurses that spent time educating us on the the use of Epinephrine (the Epipen).

Finally, they sent us out the door with pamphlets for the Food Allergy & Anaphylaxis Network (FAAN) and one from the drug company.

As I walked out the door of the allergist, my son suddenly felt much more fragile to me.  I longed for the sterile environment that I have at the hospital. The sterile environment with constant standard precautions in place that all the kids had when they came in to see me for feeding therapy.  Unfortunately, that isn’t the real life of a toddler.

I put our son to bed that night and went through the three pamphlets I received.  It wasn’t enough.  I still had questions….MANY!

So I hunted and I gathered.

I promised that this post would be dedicated to resources that have helped me during this first year of dealing with our son’s allergy.  This is not a complete list of what is available by any means, but for our family, it was the perfect start.  These resources have educated and calmed us.  Let me say that again, they calmed us…a ton.  They taught us and empowered us, so we don’t fear being in the presence of a peanut.  I have made a plan.  I know what to do and know why we are doing it.

My wish is that all of this information below had been placed in my hand when I walked out of our allergist’s office shivering from sheer nerves and fright a year ago.  And to pay it forward, I am dropping off this list for him to use for parents that come after us.

The first two books were quick reads and extinguished most of that early fear that we experienced.  Best $25 dollars we have ever spent.  I placed the links on the photos so you can check them out.



The Peanut Allergy Answer Book – Michael C. Young
This book explains the peanut allergy and anaphylaxis.  It also discusses new diagnostic tests, new vaccines and therapies, and new information on the history of peanut allergy.  For our family, this book helped to eliminate the fear of the Epipen.

Here is Amazon’s blurb about the author.  Isn’t this who you would want advice from? 
“Michael C. Young, M.D. is Assistant Clinical Professor of Pediatrics at Harvard Medical School and practices at Children’s Hospital, Boston and at South Shore Allergy & Asthma Specialists in South Weymouth, MA. Dr. Young is a member of the Massachusetts Department of Education Task Force on Anaphylaxis that developed the first guidelines in the country for the management of food allergies and anaphylaxis in schools.”



Want to know why the peanut allergy is an epidemic that only seems to be found in Western cultures?   Read this book and find out.  This book was written by Heather Fraser after her own child had an anaphylactic reaction to peanut butter.  Like us, there is no history of this allergy in her family.  For our family, this book taught me how allergies are made…yes, I said made.  Eye opening, jaw dropping…scandolous!  (who needs Real Housewives!)

REAL online resource and support group:
Food Allergy & Anaphylaxis Network) (FAAN)http://www.foodallergy.org/  
This is a wonderful resource with a ton of education.  They also have a pre-printed Allergy Action Plan (here is the link: http://www.foodallergy.org/page/food-allergy-action-plan1).  If you are a parent, teacher, babysitter that works with a child with a peanut allergy ask for this from their parent.

Kids with Food Allergies
www.kidswithfoodallergies.org.

Magazine:
Allergic Living Magazine – Allergy, Asthma and Gluten Free http://allergicliving.com/

BLOGS:
There are a ton of food allergy blogs out there.  I am not planning on leaving a single one out.  I am doing my best to check ALL of them out and link them to my Facebook page for anyone following this blog.  So be sure to check out Chew Chew Mamas Facebook Likes!

The Nut Free Mom
http://nut-freemom.com
This is a mom who has one child with food allergies and one without.  She is also a contributing writer to Allergic Living Magazine and has been featured in other publications.

No Nuts Moms Group

MOMS with children with a Peanut Allergy:
Allergy mom’s bond quickly and it’s a great thing!  Deanna Jakubowsky, a friend through our family, was the first mom that reached out to us after when got our most recent diagnosis.  Seeing her bright, funny, handsome and wonderful nine-year-old boy with a peanut allergy playing happily with my nephew this summer and knowing that he is successfully surviving school, parties, play dates and cub scouts made us let out a huge sigh of relief.  Most impressive was that he was able to tell me all about his allergy and his reaction to peanuts in his own words.  He is well educated on his allergy which is such a testament to all of the work that Deanna has put into keeping him safe.  She is a wonderful mother and has been a continued source of information for us and I am very grateful for her friendship.

MOMS without a child with a peanut allergy:
They say it takes a village.  This portion of the blog is to thank all of our amazing friends that look out for our cub and see all the wonderful that he is past his food allergy.  We have been to 12 birthday parties in the last 4 months – yes, twelve birthday parties filled with toddlers.  Our friends have sent me photos of food labels, chosen peanut free food choices for these parties on their own, warned me upon our arrival when they saw peanut butter on celery slices within toddler reach, sent me links for allergy alerts and information on allergy traveling, come to play dates peanut free….you name it!  To say that we are a blessed family….is an understatement.  We are so grateful!  Thank you, Mamas!  We love you all so much.

Lastly, I wanted to include links that I found for adults living with peanut allergies that I found inspiring for anyone following that is an adult.  Sloane Miller is funny and just released a great book.  Check out both sites below!

Adults living with Peanut Allergies
Sloane Miller: http://allergicgirl.blogspot.com/
Sandra Beasley: http://www.sandrabeasley.com/

As always, thanks for reading and following my blog!

Comments

  1. Andrew says:

    Amazing blog – thanks so much for putting these experiences into written form!

  2. Thanks for including my blog among your resources! That is wonderful that you and your family have found it to be helpful.

    Best, Jenny Kales, The Nut-Free Mom blog

  3. chewchewmama chewchewmama says:

    It was my pleasure, Jenny! Your blog is full of great information and has been very helpful to our family, especially when we were first starting out. Thanks for stopping by to visit Chew Chew Mama!

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