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Current Board Members
Name
Joy Meyer
Amanda LeFew
Rhonda Bunte
Jackie Mortensen
Dominique D'Oliveria Attai


Member Bios

Denise Bard, Co-Founder

Hi my name is Denise Bard. I am the co-founder and Chairman of The PIC Foundation. I am also the mom of Delaney (12/03) and Carson (9/05) who both have protein Intolerance.

I will try to make this a reader's digest version. My son was born 2.5yr ago. I started to breast feed as I did with my daughter. While still in the hospital I noticed something was not right. He was choking a lot. Things would progressively get worse. He started forcefully spitting up (didn't realize at the time this was projectile vomiting) almost immediately. It seemed as if I was nursing around the clock, he was spitting up around the clock and screaming and arching (you get my point). Our lactation consultant came over on a weekly basis and weighed him in. Sure enough no matter how much he spit up my guy kept SLOWLY gaining. My daughter at this time was not quite 2yrs and my husband who serves in the Air Force was gone a week from home a month all year round. I was struggling to maintain my sanity. Every time I called the doctor and said something isn't right I would get the "he has colic and he is a happy spitter". I have no idea where they saw the happiness in him.

By the end of two months they came to the conclusion that he had reflux. Thus started our journey on those meds. Also at the end of two months I decided enough was enough of BF. It was one of the hardest decisions I had made. But I wanted my son to get some relief and come to life. This began our formula trials. I should also add that by 2.5 months we started putting him in his swing to sleep since, honestly, he would not sleep longer then half and hour at a time. Yes, when I say my sanity was slipping, it was slipping.

Fast forward a bit to 5.5 months. By this time I had to quit work because our day care provider could no longer give him the attention he needed since she cared for 6 other children (including my daughter). I also had enough and after his stools became very mucusy and he spit up blood, I finally was approved to see a specialist. I must mention I had been keeping a food journal for him since he was 2 weeks old. This gave us a leg to stand on, not to mention he was screaming and spitting up while there with the GI doc. By 6 months he was put on Neocate Infant formula. What a difference. We finally got our baby boy!! Up until then he hardly laughed or smiled or really had energy. It was like he was so empty inside. After two weeks (trialing formula we always noticed a slight difference but once two weeks came they all would fail) he was great and just happy. He still spit up but the force behind it was no longer there.

Life was good or so we thought. We lived in Omaha, NE. and were seen at the Children's hosp. there with the GI doc. I need to mention that when we got the dx (at 6 months) of MSPI that is all they gave us. No guidance or follow ups, nothing. I would call a lot with questions. When do I feed him, what do I feed him. Also, the Necoate constipated him. What they said was to wait till he was 7 months to start solids and just to avoid milk and soy. Also to try prunes for the constipation. Ok, so we did all of that. Prunes did not work, pears did. As for the other foods, everything that went in came out both ends. When I say I did laundry everyday, I mean two loads just to keep clean clothes and blankets. It was awful.

By 11 months we were getting ready to move to NJ and the GI decided it was time to see an allergist. The allergist did SPT which of course did not show milk or soy but did for a few other things. He also said by the way I think your son has FPIES. When you get to the east coast have an allergist see him and tell him that I (that allergist) suspects FPIES. Sure enough after Carson's first birthday his current allergist (Dr. Spergel - Children's Hosp. of Philadelphia) performed Patch Testing and Carson was in the hospital a few days after the patches came off.

Fast forward to 1 year ago. After searching the web and not finding a lot of information on FPIES or protein intolerance I along with a few other moms started a non-profit organization called The PIC Foundation (Protein Intolerant Children) in hopes of raising funds to aid in research . We have a website which is coming along and we are still in the baby stages. Mostly because our kids are usually sick throughout the winter since their immune systems are low. We started the foundation because we felt alone. There were many groups geared towards the IgE allergy community but nothing for intolerances or IgG kids.

A little more on Carson. When people ask me what he is allergic to, I usually will reply "Everything". That is because Carson has failed almost all of his food challenges. His diet is made up of: Neocate Infant Formula (22cal concentrate, because he failed Jr and One +), Healthy Times teething Biscuit Van., Beechnut Beef, pears and apple juice. In a rotation diet he can have green grapes, strawberries and sometimes Banana's. Just recently (keep your fingers crossed) he has passed pork chops and Ian's alpha potatoes puffs.

Delaney my oldest has MFPI to dairy and Poultry. Looking back at her days as an infant we now know she had MSPI. She was constantly congested, had mucus in her stools (which we thought was just from congestion), and her diapers were always explosive (several times a day) and when weaned to formula started a road of constipation.

I hope to be able to share what I have learned on our journey and learn from everyone from their journeys.



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