The PIC Foundation Newsletter     September 2008 In This Issue Update on PIC activities   New Goals & Plans   Opportunities to Volunteer & Support     BEST WISHES   We would like to wish our Treasurer, Erin Werkmeister, all the best in her future endeavors.  She has stepped down as our treasurer to fulfill her family obligations and begin nursing school.  Thanks for your hard work and dedication to the group, Erin.  Best of luck to you. Our Sponsors Your business website will be listed here when you donate to The PIC Foundation.     Board of Directors Denise Bard,  Chairman, Treasurer Christy Bryant, RN Vice Chairman Michelle Lamberty, LPN Secretary Sabra Dunham IT'S BACK TO SCHOOL TIME!   The PIC Foundation met for it's quarterly meeting the first part of August.  With getting older kids back to school and getting families back on track with routines, the Board Members of The PIC Foundation have a renewed energy to move forward with the direction of our mission and goals.  NEW BOARD MEMBER   The Board has been actively recruiting new members from within our communities who do not have protein intolerant children to give us an un-biased perspective on running this organization. We would like to extend a very warm welcome to our newest Board Member, Sabra Dunham.  She will be in charge of research.  She has extensive experience in researching a variety of topics and will be contacting organizations who may be able and willing to take on our research projects. Sabra is the first community member to volunteer for us. She is the mother of an 18 year old daughter, who is a college sophomore. Sabra is very excited about the opportunity to use her skills to help further the mission of The PIC Foundation.   GOALS AND PLANS   We have established a new contact with Kenneth M. Slaw, Ph.D.. He is the Director of the Department of Membership and Strategic Planning Initiatives for the American Academy of Pediatrics.  He has started support/research groups in the past for children with rare diseases that have been quite successful.  He is excited to help The PIC Foundation in any way needed.  We are thrilled to have him as a contact.  He has offered wonderful guidance for our cause already.     With that in mind, we have shifted our goals slightly.  Instead of contacting doctors with mailers and emails, we will be focusing on contacting research organizations at the university level to look for ways to pinpoint the cause(s) of protein intolerance and develop testing to promote earlier diagnosis and maybe even effective treatment one day!  We would like to get doctors' attention by having someone to take on our research project and/or do an article submission in one of the Medical Journals that doctors read. We have learned that parent groups usually are able to direct 100% of funds raised straight to research instead of paying into overhead.        NEW ON THE FORUM     We are working on collecting and adding FAQ's to the threaded forum on our website. We are also starting a topic just on dealing with the emotional aspects of taking care of special needs kids and the effects it has on our lives and families. Many of us have experienced burn out and we have felt the need to have somewhere to express those feelings. The rules on this forum topic are simply that it is for an emotional outlet only. No exchanging of medical information about the kids. Just one place where we can decompress and care for ourselves for just a minute.   NEW ON THE WEBSITE   We have a "Book" tab with a list of books we have found to be helpful reading over the years. Feel free to submit your favorite to add to the resources we have.   EDUCATIONAL SEMINARS   One of our goals is to have an educational seminar going on in some part of the country at least once per month. Denise has conducted several of these in her area and they have been huge sucesses. The result is more people know about us. We have had a huge increase in website traffic....over 2000 hits! Denise has also been contacted by a church group who wants to fund raise on our behalf! If you are interested in conducting an education seminar in your local area (ie: your child's school, daycare, or church), just let us know. We will provide you with the tools and training you need to conduct a successful seminar!     OPPORTUNITIES TO VOLUNTEER & SUPPORT Did you know that all contributions to The PIC Foundation are tax deductible? All corporate and business contributors will be listed on our website and all contributors will be acknowledged in our quarterly newsletter. We need your donations to continue to provide free information and resources on our website and to help support important research to help Protein Intolerant Children. click here to support our cause: The PIC Foundation Donation Hub The PIC Foundation is a growing organization, and with growth comes new responsibilities.  We have many areas that we need help with.  If you are interested in volunteering your valuable time to help our cause, please contact either Denise or Christy for more information.  Some areas we need help in are: collecting Recipes and helpful websites links, collecting frequently asked questions from other discussion groups to put on our threaded forum, collecting info on preferred probiotic brands, digestive enzymes and brands, fundraising ideas (church groups, moms groups, etc.), website design, data entry. We also need 2-3 more Board Members. There is a Board Member "job description" listed on our website.

 

 

The PIC Family of the Quarter

Andrew’s Story

Submitted by Dianne Wood, mother

My husband and I often describe our first two years of parenthood with our daughter as the “innocent” part of our parenting life. That all certainly changed when our second child, Andrew, came along!

Symptoms: Looking back at Andrew’s first seven months now, we see things that were most likely symptoms of his MSPI and reflux if we had only known to look for them.

• Andrew spit up colostrum at 3 days old (I never knew that colostrum spit-up was orange!).

• He never had the explosive, gassy newborn bowel movements that most newborns have. At the 2-week well baby visit, the pediatrician said that Andrew had “a slow digestive system.”

• By three weeks old, Andrew was miserable, crying, gassy, and not sleeping well. Everyone told us that he had “colic.” Oh, how I have grown to HATE that word! We now realize that “colic” is not a diagnosis but is a description of behaviors that can indicate serious pain needing attention.

• Andrew’s “colic” was nearly 24/7. It was certainly not the “3 hours a day, 3 days a week” periods of colicky fussiness so often referred to by the “experts.” He was miserable probably 90% of his waking hours (and his sleeping periods weren’t much better). We knew that something was wrong with him, but couldn’t get anyone to consider anything other than “colic.”

• Andrew nursed for comfort all the time. By two months of age, he looked like a sumo wrestler, yet he was miserable. I sought breastfeeding assistance and I was advised that I had either an overactive letdown (OAL) or that I had a foremilk-hindmilk imbalance, etc. Yet, the typical solutions for these situations did not make any difference at all in Andrew’s “colic.”

• Early on, I eliminated all “gassy” foods from my diet since I was exclusively breastfeeding Andrew. I also tried eliminating milk from my diet but I replaced it with soy milk. Unfortunately, neither the pediatrician or the breastfeeding support group I attended suggested that I check labels for “hidden” dairy ingredients. After several weeks of being “milk-free” and seeing no difference, I went back to eating dairy. At the end of those long miserable days, I found great solace in my big bowl of ice cream!

• Around 2 months old, he developed a rash on his upper right forearm that looked like eczema and ringworm. Yet it did not itch, did not spread, and did not respond to any topical treatment. Eventually, he got the same rash on his left upper forearm and the back of both legs on his calves. (The pediatrician advised us that it was “eczema” and would clear up on its own.) The rash persisted for five months until we changed his diet, then it cleared up within a week.

• At around 4 months old, his misery got a little bit better. He was only “colicky” about 70% of his waking hours (instead of 90%). We felt like we had won the lottery! However, he probably only became happier because his system was starting to shut down. He began to lose weight. We realize now that he also was not urinating much either. We finally got the doctor’s attention at his 6-month “well” baby checkup when Andrew had dropped another pound and had entered the Failure To Thrive (FTT) category. Andrew’s blood work showed a malnourished baby despite his nursing and eating constantly.

How we got the diagnosis: We were referred to a pediatric gastrointestinal doctor who had us give Andrew Alimentum formula instead of breastmilk for two weeks to be able to monitor how much Andrew actually consumed. (I rented a hospital breast pump to maintain my milk supply.) Andrew gained 4 ounces in less than 24 hours! We were shocked and delighted!

The ped GI also ordered an upper GI with small bowel follow-through to check for physical abnormalities and a sweat test to rule out Cystic Fibrosis. By the end of the two weeks formula test, Andrew had gained back over a pound and his rash had lessened quite a bit. He was now “colicky” probably only 40% of the day. It was so refreshing – almost like having a “normal” baby.

The ped GI dismissed us saying that the tests were negative and Andrew was obviously doing better than before. He said I could return to nursing if I wanted to. We pressed him to find out what had been wrong with our baby for all these long, miserable months. In passing, he referred to “milk protein intolerance” but immediately said “Andrew doesn’t have that since he doesn’t have blood in his stools and doesn’t have diarrhea or a rash.” We protested that he only ever had diarrhea and that he had been covered with a rash for five months.

The turning point: That frustrating experience proved to be the turning point for us and for Andrew. Despite having previously spent countless hours researching Andrew’s symptoms on the Internet desperately searching for answers, we had never stumbled upon the term “protein intolerance”. We knew Andrew didn’t have a milk allergy (his RAST test was negative for milk), but had never before heard of milk protein intolerance. Thanks to the ped GI’s offhand comment, we finally had the right search term, learned about MSPI (milk soy protein intolerance), made our own self-diagnosis of Andrew’s condition, and began a milk/soy-free treatment plan.

From our Internet research that night, we learned about Neocate and ordered some online right away. (The ped GI told us that we could “waste our money on it if we really wanted to.”) Within 24 hours of starting on Neocate, Andrew was “normal”! It still makes me cry as I remember that day – October 5, 2006. Andrew was 7-1/2 months old and I finally had a happy baby for the very first time!

I pumped and dumped my breastmilk for two weeks as I changed to a milk/soy-free diet. After returning to nursing, it quickly became apparent that something in my diet was still bothering Andrew. So, I went back to “pumping and dumping” for two weeks and began the Total Elimination Diet (TED). This time when I returned to nursing, Andrew did not deteriorate! I began adding foods back into my diet very slowly. Four weeks into TED and quite by accident (I bought the wrong cereal), we determined that Andrew is also intolerant of gluten. (Being “glutened” gives Andrew severe lower intestinal gas pain and problems passing gas.)

Reflux: After nearly a month of normalcy while on Neocate, Andrew began having terrible nighttime episodes with reflux.

Over the next few months, we struggled to find the right medicine and the right dosage to relieve his continuing frequent nighttime reflux pain. We finally found the right combination for Andrew to be Zegerid and Mylanta. We suspect that his reflux has really been an issue from the very beginning and wonder if this late flare-up may be due to the many months of damage from constant refluxing and spitting up.

Other tests: After five and seven months, respectively, on my slowly-expanding TED menu, we chose to submit Andrew’s stool and blood for tests for IgA and IgG antibodies. The IgA stool test by EnteroLab confirmed for us his intolerance to milk, soy, and gluten. The IgG blood tests seem to agree with these same findings and showed that he should be fine with all meats, fruits, and vegetables thus freeing me up to greatly expand my diet. (We realize, however, that the IgG results are highly subjective and likely only worked for Andrew since he had so many months of receiving the offending proteins in my breast milk.)

Effect on the family: Those endless “colicky” months were extremely stressful for all of us. We only survived because of having hope that “tomorrow has to be better than today – it sure can’t be much worse.” Our daughter was 2-1/4 years old when Andrew was born and I feel bad for all of the things she missed during those long months of crying. Thankfully, she likely won’t remember any of it other than “Andrew used to cry a lot.” She did revert to needing some comfort things most all of the time (pacifier, favorite stuffed animal). Thankfully, my husband, my parents, and some close friends were able to spend the individual time with her that I was unable to provide.

Current situation: We have found a new pediatrician who is much more familiar with Protein Intolerances and has other patients with similar conditions.

For the past three months, Andrew has had one of his “intolerance rashes” again so we have been removing the most recently added foods from his diet and my diet one by one until we can identify the offending food. It is such a slow process, but necessary in order to be able to move forward and try new foods again. We can’t trial any new foods until the rash is cleared up. Andrew’s MSPI was much harder to accurately diagnose since he never had blood or mucous in his stool.

In general, though, Andrew is a healthy, happy toddler now. You’d never know from looking at him now that he ever had Failure to Thrive (FTT) problems – he is solid and round. Yet, he still struggles with lower intestinal gas pain at night and is still on reflux medication. Hopefully, he will grow out of his milk and soy intolerances soon although we are aware that the gluten intolerance will likely be a lifelong condition. But, after being on TED and being milk-free, soy-free, and gluten-free, being just gluten-free will seem like a breeze!