My son, Mash'Allah :)

So I was in K-Mart, sans hijab.  I didn't have it on for a stupid reason, and so when I saw a hijabi shopping, I felt ashamed...and kind of ignored her.  (We weren't close so it wasn't rude ignoring, I just didn't go out of my way to salaam).  Well, I've apparently instilled better Islamic manners in my son than myself, because Noah, just shy of three, sees this woman in a hijab, marches up and screams "Asalamu'alaykum!!!"  I was still ashamed at not wearing hijab, but this started a conversation between this woman and myself that would have never happened otherwise.  Her family is from Libya, and she learned mine and my husband's backgrounds.  I met her four children (and my son screamed "asalamu'alaykum" at every one of them in turn) and she met my one.  My son grabbed her youngest, a sweet little girl in a beautiful dress, masha'Allah, and proclaimed that we were taking her with us, lol. (He WANTS a baby, and I keep telling him to take it up with his father, because if it were up to me...)  Anyway, it was just a really wonderful encounter between two families that would have never happened if it wasn't for my wonderful son, masha'Allah.

Just wanted to share!  It's sooo late or I would have elaborated.  :)

Raising FPIES Awareness and Our Personal Story

PLEASE READ THIS! Even if you don't want to shop or donate, my main concern is raising awareness of this condition.  Educate yourselves, pretty, pretty please and thank you!

Nikki, of Stiving to Be the Best Me, and FPIES United Family Fund invite you to shop for a cause and a cure!

What is FPIES? Food Protein Induced Enterocolitis Syndrome (FPIES) is a non-IgE allergy. The symptoms of this type of allergic reaction are delayed and include repetitive vomiting that may not start for a few hours following ingestion of the food to which the child is allergic. Even trace amounts can trigger a reaction. There is often diarrhea filled with blood, mucous and undigested foods that starts later. In some cases, the reaction includes hypotension and lethargy. Occasionally, the child becomes so severely dehydrated from uncontrollable vomiting and diarrhea that they run the risk of shock. The treatment is symptomatic and can include hospitalization for IV fluids and steroids. The latter is given because the pathophysiology is that of a T-cell response  

 Why do we need your help? FPIES is a condition that mainly affects infants and young children.  Many families have had to fight for months or even years to obtain a proper diagnosis for their child’s recurrent flu-like symptoms and hospitalizations.  There is no diagnostic testing available for FPIES so many children go undiagnosed, leaving them at high risk for unreparable gut damage, failure to thrive, speech delay, food and texture aversions, or even life threatening shock.  Established in September 2010, the FPIES United Family Fund is the first and only grassroots research fund for FPIES worldwide.  Currently, the FPIES United Family Fund is pleased to become a funding resource for FPIES research in   the newly developing Food Allergy Center at the Children’s Hospital of Philadelphia (CHOP). The Food Allergy Center has developed very ambitious goals and hopes to prevent, and one day eradicate, all food allergies and their accompanying life-threatening dangers and lifestyle hardships that affect a dramatically increasing population of allergy patients.   In just over a year, FPIES parents from across the nation have worked together to raise $37,000.  Unfortunately, The Food Allergy Center cannot begin research until we raise a total of $300,000

How can you help?  It’s easy!  All you need to do to help us help these children is to shop at my personal Thirty-One website: www.mythirtyone.com/Lquraish/.  As an independent consultant, I am paid a 25% commission off of every order placed through my site.  Simply choose the FPIES Fundraiser event when placing your order between Thursday, October 13 – Saturday, October 29, 2011, and I will donate all of my commission to the FPIES United Family Fund in support of FPIES research.

Personal Story:  My son was breast fed exclusively until at 6 months of age we introduced oatmeal.  He seemed to eat it just fine, but then he started what seemed like sporadic episodes of vomiting.  Looking back there were many days when he would suddenly vomit two to five times, fall immediately asleep, and wake up as though nothing had ever happened.   Finally, after many of these episodes, my mom-tuition kicked in and started connecting the dots to oatmeal.  What prolonged my confusion was the fact that the vomiting always occurred at least two hours following ingestion of the food.  I was stumped.  We visited his pediatrician only to be told that allergy to oats was almost unheard of, and all of these episodes, sometimes occurring as frequently as every other day, were independent bouts of the flu.  After seeing us multiple times, they finally conceded that oats may not agree with Noah, and told us to avoid them.

 Noah started having reactions following the ingestion of other foods, though, and he was eating such a variety at this point that it was hard to pinpoint and remove the offensive foods.  At just shy of 11 months of age, Noah ate a meal of squash and egg yolk, both later found to be known triggers. The combined reaction caused Noah to vomit 9+ times and become lethargic and almost completely unresponsive.  He was rushed to the ER.  Noah was suffering from life threatening shock, yet the hospital, didn’t believe that this reaction could be food related, and performed a whole series of unrelated tests  (CAT scan, EKG, spinal tap, x-rays) before giving him the life saving IV that he truly needed.  Noah was so lifeless that he barely flinched when the stuck him with needle after needle trying to find a vein for an IV.  After being pricked at least 10 times, nurses from the NICU were finally called in to administer an IV drip in Noah’s temple.  The IV brought him back to life, but severe diarrhea and unknown test results kept him in the hospital for five days.  His diagnosis upon release:  the flu.  This terrifying episode led us to specialist after specialist and test after test.  Noah was at one point only able to eat apples, bananas, pears, breastmilk, and Neocate (a hypoallergenic, very costly formula).  His first birthday cake was simply a banana.   

Noah suffering from a life threatening shock reaction at just 10 months of age.  It took another 10 months for an FPIES diagnosis.

After 10 months of doctors we finally had an allergist agree with us that FPIES was the proper diagnosis.  Instead of treatment options, in office trials, or guidance, though, we were told, “Whatever you’re doing seems to be working.”  We were left to trial new foods on our own, with the fear that another trip to the ER was inevitable, and that the hospital would give us the go around of tests again.  It’s now been over a year since we’ve visited a doctor regarding Noah’s FPIES.  Noah is thriving so long as his diet is free of his seven known triggers: rice, oats, sweet potatoes, green beans, squash, chicken, and eggs.  His third birthday is coming up which means a retrial of his first fails is in order, to see if he is outgrowing the condition at all.  To say that I am terrified is an understatement.  

Our main source of guidance throughout this rocky journey has been other FPIES parents, online, who have been fortunate enough to live near doctors familiar with the condition.  The FPIES United Family Fund was started by a mother just like me, a mother who needed answers for her son’s health and well being.  I am proud to join her in her efforts to support this worthy cause.  It is unlikely that research results will help Noah, but our vision is to help all of the FPIES children and parents that come after us.  Everyone deserves the opportunity to feed their child without guilt.  Many current FPIES families are finding this sample task, so often taken for granted, impossible.

Donations can also be sent directly to:

CHOP Foundation
Attention:FPIES UNITED FAMILY FUND
Lock box #1352
PO Box 8500
Philadelphia, PA 19178-1352
**PLEASE BE SURE TO SPECIFY FPIES UNITED FAMILY FUND ON YOUR ENVELOPE AND CHECK**                     

For more information, please visit the following: 

http://giving.chop.edu/site/TR?pg=fund&fr_id=1030&pxfid=6824

http://www.thefpiesfoundation.org/

http://abcnews.go.com/GMA/video/parents-limit-child-10-foods-rare-allery-14018160