Meet The PIC Team: Beth

My super sweet baby boy was born in March 2011. At only 4 days he was admitted in the ICU for severe dehydration.  The dehydration was so severe that he had lost almost 2lbs in those 4 days and it was affecting his liver and kidney function.  I was told at the time that he was so dehydrated because my breast milk had not fully come in, and was told to start supplementing with formula.  Because this was my second child, I knew that something was not quite right with that answer.  My biggest concern was that he was having 10-15 dirty diapers a day, so if he wasn't eating enough, how could he be having that many BMs? My questions were disregarded and we were sent home after 4 days in the ICU.

At home Jaiden was both nursing and supplementing with formula. I knew in my heart that something else was wrong, that something else just wasn't right.  A week after being on the formula, Jaiden started having bloody diapers.  It was suspected he had a milk sensitivity and he was then switched to soy formula.  After about a week on that, he continued to have the bloody diapers and was switched to Nutramigen and I stopped nursing.  After another week on Nutramigen, and continued bloody diapers, I researched and found Nutramigen AA for severe Milk Protein Allergies.  I presented this to his doctor, she had never heard of it, but agreed that we should try it.  Only, at that point it was too late.  At 5 weeks old Jaiden's blood count had dropped too low.  He was again admitted to the ICU and then later transferred to U of M where he could be seen by a Pediatric GI.  There he received a blood transfusion and an upper and lower GI scope.  He was diagnosed as MSPI and started on the Nutramigen AA, and was on that formula until his first birthday.  It took a few weeks, but the bleeding stopped and his blood count went back to normal.

At 6 months old we started solid food with Jaiden. We started with all white and orange foods, because those are the foods with the smallest proteins.  We tried one food at a time for 10 days before introducing another food.  During that first year we found he reacted to Dairy, Soy, Sweet Potatoes, Beef, Wheat, and Peas.  However, he did pass many other foods, and now has a list of 29 safe foods.

Now at age 1, Jaiden has been diagnosed as MFPI. He remains on a very restricted diet and each new food is slowly introduced over the course of many days.  I make almost all of his food from scratch, which is very time consuming.  With the help from a dietitian, we have decided to wait until Jaiden is 3 before trying any of the foods he has reacted to.  Until then, he is on Neocate Splash Amino Acid based formula, along with calcium and vitamin D supplements. I have very little guidance from the medical field, so 99% of my decisions are based on information I have learned in support groups such as PIC foundation.

Meet the PIC Team: Heidi

Hello, I am Heidi a NICU nurse in Lincoln, NE.  I am also the mother of three children who have or have had MSPI.  I wanted to share my MSPI experience, and also share an article I have written about MSPI

My MSPI Experience:

When my first daughter was a newborn, she was fussy.  She would cry when she was laid down at only a day old.  At first, I thought it was because my milk hadn't come in yet and she was so tiny and hungry.  So, I nursed her and nursed her and nursed her.

Over the next couple days, my milk came in but my baby got fussier!  By the time she was two weeks old, she was crying more than she did anything else.  Almost nothing worked to soothe her.  We tried taking her for car rides, carrying her in a baby carrier, singing, bouncing, walking the floors...nothing helped.

Finally, at three weeks old, it got to the point where she began crying while I was nursing her.  She would nurse for a little bit, pop off and scream, nurse, scream.  It was miserable.  She was never happy, never!  One night, after having pizza for dinner, she was worse than she ever had been.  I sat there with tears running down my face trying repeatedly to nurse her to soothe her.  It didn't work.  She screamed until she wore herself out and fell asleep exhausted in my arms.  The next day, I finally took her to the Doctor.  After I explained my concerns (a bit sheepishly, for I was sure I would be told, "babies are fussy, it can't be THAT bad), the Doctor tested my baby's stool.  It came back positive for blood and reducing substances.  My pediatrician said this fit the clinical picture for Milk-soy protein intolerance. (MSPI)  Because I am vegetarian, she said I could try just eliminating milk first and then soy as well if there was no improvement.  I thanked her, but said I would cut both out immediately.  I was desperate to see my daughter improve.

Two weeks later, we had a different baby.  We finally saw some smiles!  She still had reflux and had to sleep with her head up, but it was so much better!  My diet was no fun, but I kept telling myself, "It's just food...it's just for a year or so of my life!"

My husband and I went on to have two more children.  With my second child, I was able to nurse off milk and soy for six months, at which time I also cut out eggs and later wheat.  However, she was intolerant to most grains, numerous fruits, and was only able to eat turkey and sunflower seed butter for protein.  I weaned her abruptly from breast milk to Neocate at a year and was able to gradually transition her to potato milk (Vance's DariFree) and then later rice milk.

With my third MSPI child, I was off milk, soy, eggs, nuts, wheat, and corn by six weeks of age.  However, I was able to gradually add in everything but milk and soy by ten months, soy by 11 months, dairy by right around a year.  I am unsure why he was less mild, but wonder if it had to do with faithful administration of a priobiotic every day from early infancy.  I am still breastfeeding Samuel, he is 18 months old and thirty pounds.  He can eat anything, although I have not tried peanut butter yet.  He drinks oat milk, nurses twice per day, and does fine so long as we do not feed him too much dairy.



Feeding the MSPI baby

Breast milk remains the best option for infant feeding.  In addition to its traditionally known immune-protective and many other benefits, it also offers the mother the option of tailoring its composition to suit her baby.  This is especially true in regards to babies who are intolerant to corn.  To my knowledge, every infant formula contains corn syrup solids with the exception of Alimentum RTF (ready-to-feed).  And, as Alimentum RTF contains broken-down milk proteins, this option may not be a viable one for the most intolerant infant.

Many mothers find it helpful to begin with eliminating milk and soy, and then moving on down the list of the top allergenic foods: egg, peanuts, tree nuts, fish, shellfish, wheat, corn. Interestingly, some babies who appear to tolerate almost nothing their mother eats may tolerate a rotation diet where the mother eats a very basic total elimination diet but then adds in something different low on the allergen scale every 3 days or so.  This technique may also be a helpful option for babies who are highly intolerant of most foods they attempt to eat themselves.

For mothers who cannot or chose to not breast feed, there are several formula options for the MSPI infant.  The first category is the formula options which contain a milk protein that is broken-down for easier digestion.  This category includes Alimentum, Alimentum RTF, Nutramigen, and Pregestimil.  The second category are the formula options that contain no intact milk proteins but are made up of individual amino acids.  These include Neocate, Elecare, and Nutramigen AA (amino acid). These are tolerated well by most infants, but do contain corn syrup solids.

It is recommended that solids be delayed in MSPI babies until they are six months of age;  and starting with mild fruits or vegetables at this time.  Good options for first foods include sweet potato, pear, and winter squash.  Each food should be trialed for at least 5-7 days prior to considering the food a "pass."  The Jonega allergen scale can be a helpful guide for food introduction as well.  It may be found here: http://www.allergynutrition.com/resources/FAQ/15/Foods%20Most%20Frequently%20Associated%20with%20Allergy.pdf

For babies with difficulty gaining weight, adding higher-fat foods such as avocado, sun butter, fatty meats, and healthy oils such as olive and canola to the diet may be helpful.  Sweet potato fries, grains cooked with added oil or earth balance soy-free, coconut yogurt, and making "fudge" from exra-virgin coconut oil (solid at room temperature), agave nectar, and carob or cocoa powder are some high-calorie foods children enjoy.

What techniques have you found helpful to find success in adding new foods to your diet as a breastfeeding mother?  Any great food ideas to help your lower-weight infant or toddler gain weight?  What solids foods have you had success with in your highly intolerant infant?

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