ABOUT US

Denise Bard - Chairman, The PIC Foundation

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.  

 

Christy Bryant - Vice-Chairman, The PIC Foundation

I helped to start this organization almost 1 year ago, and it has taken me that long to write this bio. Mainly, because this is still such an emotionally charged issue. I still can’t think about what my little daughter has been through without welling up in tears. I am a Registered Nurse who, in November 2005, became a single mother to a beautiful little girl. Teagan was born 2 ½ months prematurely and weighed only 2 lbs 2oz.  I immediately began pumping my breast milk and storing it up for when the time came that she would be able to eat by mouth. Teagan was amazing and absolutely sailed through the NICU without incident. She gained weight right on track and mastered all of the developmental goals required for her to get to come home. Finally 7 weeks later, she came home to me on Christmas Eve 2005. And that is when our story began.

In the hospital, they mixed Human Milk Fortifier into my breast milk in order to increase the calorie content and help her gain weight. That stuff is too expensive to send her home on so they changed it over to Neosure formula the day before discharge. Both of these items are cow milk based. I grew up on a dairy farm and so milk, cheese, yogurt, and other dairy were a part of my daily diet. I was not aware of anyone in my family ever having had a problem with dairy products. Teagan’s 1^st check up after discharge was 4 days later. By that time she already had green, slimy stools with occult blood in them. I didn’t have a clue what could be causing that. As I stood in the pediatrician’s office holding my now 4 lb infant, the nurse in me began running all of the horrible GI diseases through my mind. I was scared to death.

Weeks went by and things got worse. I continued to pump breast milk and mix it with the Neosure. Teagan began vomiting profusely and continued to have horrible, green, slimy stools. She screamed endlessly and had a continual “diaper rash” that I can only describe as her skin peeling off of her bottom and leaving red, meaty flesh behind.  There was one day where she never got any sleep other than dozing off for about 20mins at a time. She literally cried for over 11hrs that day. I was beside myself and cried right along with her. I didn’t know how to help her and no one else seemed to either.

We went through an arsenal of reflux meds. We tried 5-6 different formulas to mix into my breast milk. It got to the point that I carried around at least 3-4 changes of clothes for her and 3-4 changes of clothes for me. We were constantly covered in vomit. Sometimes she projectile vomited across the room. Other times, there was just a constant, steady stream of vomit out of the side of her mouth. This went on for months. She had an upper GI series done and they found nothing. Amazingly, she continued to gain weight. So I was told that nothing is really wrong as long as she continued to gain weight and she would eventually grow out of the “reflux.”

Finally, at 7.5 months of age, my pediatrician sent us to a pediatric GI specialist. My daughter was still not even able to hold her own bottle at that time. She was extremely underweight and diagnosed with Failure to Thrive. The GI nurse practitioner immediately diagnosed Teagan with MSPI and placed her on Neocate. It worked great! It was a Godsend. 2 months later, Teagan was holding her bottle, sitting up, and crawling!! I didn’t realize just how bad she was feeling with all of the MSPI symptoms until I saw how quickly she developed with food she could actually digest.

Unfortunately, that diagnosis of MSPI was all of the information I ever received. No one said I could keep breast feeding but should eliminated milk and soy from my diet. No one said how and when I should try to introduce solid foods. No one said anything about how to manage this disorder, if she would grow out of it, if she was a greater risk for developing true food allergies. I asked the nurse at the GI specialist office for some pamphlets or websites or information on this disorder. There was nothing available.

My daughter is 2.5 yrs old now and we still battle this issue everyday. She is still on Neocate. She sees an allergist, GI specialist, and developmental therapists. She is still extremely underweight and still Failure to Thrive. I still have never received any formal information on this disorder nor how to manage it. We are still navigating unknown waters. Everything I have learned about how to manage this disorder and how to feed my child, I have learned from other parents on the internet.  I feel betrayed by my professional peers. When I have asked for information or expressed my concerns about my daughter, I have been given “that crazy mom look.” I have been told that I have Vulnerable Child Syndrome, which seems to mean stop asking questions that we can’t answer. They tell me they are impressed with her growth but at the same time say she will need growth hormones if she doesn’t start catching up soon. They have scoffed at every suggestion and piece of research I have ever brought to them.  I find that inexcusable as a professional and as a parent. As medical professionals, it is part of our job to educate our patients and their parents about their conditions and how to care for themselves.

So that is why I helped to start this organization.  I want to help other parents and children. I don’t want any child to suffer needlessly like my daughter did. I don’t want any parent to feel as scared, alone, and as powerless as I did.  I want to arm parents and doctors with solid, research-based information and tools that they need to care for protein intolerant kids.