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Tuesday, June 5, 2012

Meet The PIC Team: Joy


My name is Joy.  I am the proud mother of 4 boys.  I also am a Registered Dietetic Technician (DTR).  I have always had an interest in food, digestion, and it’s impacts on health.  Maybe it was due to my own food intolerances with IBS, but the interest has only grown through my years as a DTR as well as my first hand experiences with my sons’ allergies and intolerances.

My youngest son has FPIES.  But this wasn’t the beginning of our protein intolerance journey.  Two of my other sons had milk protein intolerances.

My first sons was manifested in colitis at 8weeks old. He also had terrible colic from 3weeks until 16weeks. I gave up dairy and soy in my diet and continued to nurse him.   I later re-introduced soy and he "seemed" ok (I was only looking for colitis or immediate type reactions), and when I weaned him he went on soy formula and was "ok"- he remained a 'happy spitter' although he was not so much happy; but everyone assured us it was “normal” and it was just his temperament. Despite being in nutrition, I simply trusted the doctors over my own gut instincts.  He did continue to grow and gain weight (slowly) so we just "stuck it out"; although I will always question the effects it had on his overall health as he later developed asthma, eczema and an IgE allergy to eggs.  Once we got  through that first year with him, and I had other children- I vowed I would never do that  again....never just take what is known currently in medicine without trusting my own instinct that was so strong; never have so little confidence in myself that I wouldn't advocate for what I knew to be  right for my children (colic robs a mothers confidence).

My 2nd son did not exhibit food intolerances while on breast milk.  He has since developed other intolerances (medications, lactose, fructose...).

My 3rd son did ok on my breast milk with a limited dairy restriction.   He didn’t have any formula until he was 9 months.  It took 2 months. for me to connect that he was not thriving on his formula; because it wasn't so much stomach pains but runny nose/congestion/foginess/fatigue/fussiness, and just clearly not thriving.  On a gut instinct, I switched to soy formula and noticed an almost immediate change.  Clearly, he had a sensitivity/intolerance, but he slowly outgrew it and around 18 months could have dairy without signs or symptoms noticed.

When my 4th was born, I was already familiar with, and survived, colic, frequent "spit up", projectile vomiting, months of puke covered cloths and furniture, food sensitivities and intolerances, etc.  So, when it began to show up in him as well- we found ourselves dismissing it as our children's normal.    He started showing signs at just a little over a week old, disturbed sleep/inability to sleep although clearly tired,  allergy eyes, explosive/foul diapers, eczema,  and gas attacks keeping  him up night.  Then the "colic" started  creeping in- but not until 3 months, when babies are typically outgrowing it, we were just beginning it!  I was attempting to control my diet, without a total elimination diet, for fear of losing my production when we started noticing issues with other foods (wheat).  At 2  1/2 months we tried formula and it was clear after the first ounce that he was not going to tolerate cows milk formula's.  This is when the colic kicked in -- looking back now we know this is likely when we woke up the FPIES "beast" and he began to react to milk in my diet (among other things).

Support and knowledge are empowering pieces to keeping your kids healthy (and your sanity) through protein intolerances.   Since my son’s FPIES diagnosis, I have been connected with many other mothers going through the same or similar experiences.  The assurances that you are not alone in this journey are invaluable.   I hope to help other families feel empowered in their own journey.   Protein intolerances can be tricky and murky waters but with the right information, resources and support; we can help our children and families thrive through it! www.fpiesmudpies.blogspot.com

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