Learning to Say Yes, a personal account shared by Amanda

“No, you may not open the fridge--- there are unsafe foods in there.” My daughter's face fell. She is three and loves every independence that comes with this age. My heart sunk--- I worried about what might happen if something spilled, if she mistook an unsafe food for a safe one. With a laundry list of trigger foods and some pretty scary reactions under our belts, the worry is fairly valid. But I also worried about her feelings.

Raising a child with protein intolerances/ food allergies certainly has its challenges at times. Our oldest daughter, now three, recently made me realize a new challenge in our parenting--- saying yes.

Certainly, there are many appropriate opportunities for limits and boundaries. But in the name of keeping our protein intolerant children safe, too often it becomes much simpler to say “no” rather than to look for ways to say “yes” to offering opportunities appropriate to age and stage.

Tonight, as I watched her response to the refrigerator restriction, I thought to myself, “How can we say yes? How can we change the situation to make it a “yes” rather than only a “no”?” We did what I know other families have done--- we offered her a shelf. It seems so simple but she lit up, she was so happy to have a place of her own.

Every family situation is different and every child's needs vary greatly, based on restrictions, reaction history, age and stage, and other individualized factors. I always assumed that we would change B's restrictions as she got older because she would be outgrowing her allergies, because the reactions would be less severe, or because she would have more food options. For her, none of those areas have really changed and in some ways, the restrictions have become greater. Despite this, I now realize that I can make changes, though not in the way I had planned initially, because she is older, she is at a new age and stage.

Here are some ways that we have found to say “yes” while still working within the realm of assessing her known risks. Every family must assess their child's risks, benefits, and age and stage differently!

1.      Going to the movies! I remember the movies as being a “sticky” situation when we were kids--- there was always food, candy, and pop everywhere. My head spinds just thinking about the risks for B! We found a compromise--- arrived at the theater for the first showing of the day at 10am. The theater was clean, there was almost no one else there, and I even managed to get the snack guy to pretend to sell B's safe candy to her (I brought along a box of sweet tarts). She had an incredible time and we had a wonderful experience as a family!

2.      Creating a “self-serve” shelf in the fridge and working on creating a “self-serve” drawer in the kitchen, where B can grab safe snacks (measured out in little baggies and cups by me) at snack times.

3.      Play group-- After doing a bit of research, we found a food-free story and craft group at the local library. We go to the earliest morning time. The facilitator is great about ensuring a food free environment. Since a large amount of early childhood playgroups involve food, it is a great relief to attend one where it isn't an issue at all.

I know all of you amazing parents have thought of ways to make “yes” moments in the face of restrictions. Let's share these moments with each other so that we can all work together to provide as many safe opportunities for our children to grow, experience social activities, and express themselves.

Meet The PIC Team: Heather

Levi was born in late June, 2010. My pregnancy had been less than “normal”.  We had a planned c-section and at 1:34pm I heard him cry for the first time.   They brought him over and I got to peer into those big eyes and knew my life was going to change forever.  Little did I know how much my life was going to change.
After delivery Levi was transferred to the nursery while I was stuck in the O.R. for several hours due to complications.  5 hours after his bIrth, I got to hold my son for the first time ever.  Unfortunately due to more complications I was sent up the the ICU while my son stayed with my mother on the labor and delivery floor. I was only allowed to see my son 3x a day for about 15 minutes each time.   I was so sick it was hard to keep up with the pumping, but i still tried.  Finally I was reunited with my son and we continued trying to breastfeed.  I remember calling the nurses in because he was throwing up after every feed.  They told me it was completely normal for him to spit-up and he had been doing that with the formula they were using also. The lactation consultant came in and talked about increasing my supply and supplementing in the meantime.
Days after heading home we realized that things were not right.  The vomiting, the arching of the back, the crying, lack of sleep was just unbelievable.  We went to the pediatrician and they said it was normal, but he might have reflux and started him on Zantac and switched his formula.  Next week i was back complaining things were not better and I was told these things need time.  By the time he was six week old he had been to the pediatricians at least twice a week,  on our 3rd formula trial, 2nd reflux medication on a prescription for his eczema.   I was doing laundry every day because I just couldn't keep up with all the vomited clothes [both his and mine].  I was exhausted, tired and at my wits end.  This was NOT normal no matter what my pediatrician said and she finally realized it when I made her watch me feed him 2oz and  he threw up across the room. She finally got us an appointment with a G.I. specialist.   They switched his formula again to Nutramigen then Alimentum,  tried a new reflux medication and agreed that if he was not over this “colic” by 3 months old, we would do an endoscopy to see what his insides looked like.    During this time, my sister learned about Neocate formula from one of her friends and told me about it.  My sleepless nights centered around figuring out a reflux solution and learning about this new formula Neocate.  When I got the call from g.i. about setting up the endoscopy I demanded that they change his formula.  Doctor wanted to wait until after his endoscopy but I held my ground and I'm so glad I did.  The next day I went and picked up a few cans of Neocate Infant said a prayer and made his bottle.  Within 3 feedings he was throwing up alot less, by 2 weeks he had stopped vomiting all together and by 4 weeks his skin was beginning to clear.  The endoscopy found inflammation and irritations but we also found healing tissue.  The Neocate was definitely working! After the biopsy results came back we got the diagnosis of Milk/Soy Protein Intolerance.
For several months things were going great!  His reflux was being controlled by 2 medications, and he was gaining lots of weight. Neocate was doing its job and my boy was happy as can be! At 6 months old we ran into some constipation.   I called my pediatrician and they recommended trying some baby oatmeal.   Within 30 minutes of eating, he broke out in hives.  For the next 2 weeks he kept breaking out in hives, eczema outbreak and vomiting and  diarrhea that looked like he sneezed into his diaper. I couldn't figure out why. so we made more phone calls and G.I. told me it was a reaction to Oats and the reason he kept reacting was because i was slathering him in Aveeno products [Oats is a main ingredient].  He was now labeled as Multiple Food Protein Intolerances (MFPI).   After speaking to a dietitian we decided to hold off solid foods in hopes that his digestive track would mature and he would not have reactions anymore.
I had started solid foods with my son at 8 ½ months old.  Very slowly (like ½ teaspoon a day for a week then added more) .  I also started keeping a food diary to keep track of what his diapers looked like, what I fed him, if he was cranky, and if his reflux acted up.  When he was a year old he could eat apples, bananas, squash, carrots and brown rice.   Around 14 months I trialed wheat and he reacted.  I trialed chicken, he failed.  We had about 6 failed foods in a row and I was feeling really discouraged.  I ended up stopping food trials for a few months because it was just too upsetting for both myself and Levi.  Eventually we slowly started adding more foods to his diet: grapes, pumpkin, turkey (our first safe meat!!) We also had a fair share of accidental ingestion of bad foods ( I have some amazing nieces and nephews who love to share!)  It was around this time when I realized that  Levi’s milk intolerance had actually gotten worse and he needed an epipen (which I’ve had to use twice unfortunately)  So we made an appointment with his allergist to talk about doing some allergy testing.  To my surprize he did not want to do it. He informed me it was not worth the pain of doing blood tests or scratch tests because I had been keeping my food diaries.  He said that the blood tests do not determine intolerances and would do us no good. I was told to trust my gut and if i saw reactions to mark it off on our “Bad Food List”
So here we are now, my son will be 2 years old in less than a week.  We have 3 safe meats, 3 safe grains, loads of safe fruits and a few safe vegetables (no green ones though)  We also have several severe allergies that require me to keep epipens with us at all times. Along with having g.i reactions to foods he reacts to all oral antibiotics and several other oral medications. (He has a very picky stomach i like to say).  He is still required to take in 36oz of Neocate formula a day because there are days where he refuses to take anything by mouth (oral aversion; a by-product of many failed food trials). Every day is an uphill battle for us but we keep hiking, because what else can we do? Give up?  I don't think so. My dream is to go somewhere and and let my son eat whatever he wants. Will that happen? Probably not but I can hope. People tell me all the time “I don't know how you do it!”  My reply is we don't have a choice., we do what we can for the ones we love.
P.I. may have a strong grip on my son’s digestive health but you could never tell.  My kid is a fighter.  All kids with P.I. are fighters and hopefully one day they won’t have to fight so hard. Doctors will be more aware of P.I. and how to treat it instead of brushing it off. If it wasn't for websites like P.I.C.  I'm not sure how I could have coped.  These people understand what your are going though. They understand the triumph of finding a safe food and sadness of failed food trials and the frustration when family and friends just don’t get it.   We are here to support one another.

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

Meet the PIC Team: Rhonda

When my son, Sebastian was born, he was such a happy little guy, but I would notice in the evenings that he would get so fussy, scream, arch his back and be generally inconsolable.  He would constantly nurse to try to help his tummy feel better.  He also had very frequent green mucous stools: pretty typical symptoms for protein intolerant kiddos.  In any case, the pediatrician we had at that time told me it was normal.  Being a first time mom, I listened  to this, at first, since it was coming from a doctor.  At 2 months, I found blood in my son's stool and took it in and it tested positive for blood, which is when he was diagnosed with MSPI.


After eliminating all milk and soy, my son made a dramatic improvement from where we started, but I could tell he still was not comfortable and after two months was still having blood in his stools.  At this point, I started a food diary to try to identify what my son was reacting to. Through this, I was able to identify that corn, eggs, citrus, coffee, and chocolate were all offenders.  At this point, I was still trying to figure out how to avoid corn and Sebastian was still having issues, so I eliminated the top 8, plus the items mentioned above and beef, apples, pears, and some other miscellaneous items.


For a couple of months, I was pretty much on a TED diet, just to get to a good baseline.  My son was finally doing well and not having the discomfort that he had been having.  I also switched to a new pediatrician (nurse practitioner and lactation consultant) just before starting solids, she is very knowledgeable and has been  great to work with.  It is muchmore difficult when you are managing a TED diet, food diaries, and trying to keep your baby on the growth chart, without the support of your child's doctor.  It was so nice to find a medical professional who understood what we were going through and had experience with many food intolerant babies. When my son started solids at 6 months, his reflux went out of control. With her help we found a medication that worked and he starting passing food trials.


 At 15 months, Sebastian was still nursing and had 23 foods that he could safely eat. He was at 50% for height and 1% for weight. Trying to help him gain weight has been and still is a constant struggle, but since he is staying on the curve and meeting developmental milestones, his Doctor was happy. Now close to two years later, he has jumped up to 12% for weight and the list of foods his is intolerant to is finally shorter to name off, then the safe foods. He still has several foods that he is intolerant to and reflux, but has come a long way. I have learned so much from all the other parents struggling through this and know that we would not be where we are today, if not for all the support from other parents along the way.

Meet The PIC Team: Amanda

My name is Amanda and my story began March, 2009, when
my beautiful baby girl was born while we were stationed in Japan.  My
husband was deployed throughout much of Bridget's infancy. From day one
she was fussy. By three weeks old, she would scream for hours, sometimes
screaming so hard that she would stop breathing.  She slept only 6 hours
total in a 24 hour period.

Early on, Bridget had “issues” with something in my diet (reflux, green
diapers, sleep issues, etc.) but we could never pinpoint the problem.
There were a few unexplained episodes of projectile vomiting pre-solids,
but despite sensing that something was very wrong, we were blissfully
ignorant to the problem that was brewing-- Food Protein Induced
Enterocolitis Syndrome.

When Bridget turned 6 months, my husband's ship came in for a few
weeks, so we decided to start solids. Her pediatrician advised that solids
could lessen her worsening reflux. We started with rice cereal and exactly
5 hours later, hearing gagging on the monitor, found her in bed covered in
what I thought was BAD reflux. After cleaning sheets, comforter and a groggy
baby, we decided to wait a week before trying solids again.
Our second attempt resulted in delayed onset, projectile vomiting. Again,
she was groggy and now had diarrhea. I called the naval hospital only to
be told, “It must be a stomach bug.” After talking with my amazing, food
allergy smart friend, I decided to make my own rice cereal-- just rice. We
waited another week and tried again. She ate one baby spoonful, refused
the rest. Two hours later, Bridget began uncontrolable projectile
vomiting; she was groggy and had a day of diarrhea. I googled “delayed
onset vomiting + 2-5 hours + rice cereal,” and discovered the world of
FPIES that had, seemingly, already discovered us.

Since that time, she has had two more severe reactions- sweet potatoes and
avocados. Both were following multiple ingestions. The avocado reaction
required two ER visits after ingesting less than ¼ oz. It took her almost
three months to fully recover. She has had “minor” reactions to eight
foods and patch test fails to six additional foods.

Our journey with doctors was frustrating with a few bright spots. Our
pediatrician at the time of Bridget's first reaction was a good doctor,
though uninformed about FPIES. He worked with us but until her avocado
reaction, I am unsure if he appreciated the true severity of Bridget's
FPIES. Our best medical resource overseas was the WICO dietician.  She
gave me inspiration to create “meals” for Bridget with her small menu.
Recently, I happily found an amazing team of docs for Bridget at the
Children's Hospital of Boston. We see them regularly and feel like we are
finally being heard and understood.

It never ceases to amaze me how all of this journey continually brings me
back to my professional life as a board-certified Music Therapist (MT-BC).
I was constantly challenged with creating better ways to foster adaptation
and modification to bring about therapeutic goals for patients.
Here we are in the PI world, where concepts of adaptation and modification
are daily words to live by. We adapt to foods we CAN give our children and
try to convert tiny menus into varied sensory and flavorful experiences.
We modify the environment to reduce potential for accidental exposure. We
adapt to and modify our own expectations about food and keeping our
children safe.

Our quest, though not our path, has been simple-- a constant uphill push
towards normalcy. I work hard to create “normal" toddler recipes for
Bridget and keep a recipe blog to share with other families. I know that
simply baking a “special cookie” is not going take FPIES away-- I wish it were that simple.
But I focus on this because we live for moments when we
are trapped inside the PI bubble--- a moment to see our child enjoy
cookies and “milk” minus a hospital trial, to see our child play with
craft dough without worrying about a reaction. . .  a moment to see our
child through non-PI eyes, a moment to see our child simply being a child
in a child's world.

I came across the PIC foundation when looking for more information about FPIES
upon our arrival to the states. I was so honored to join this board and through my
involvement with PIC, I hope to reach out to other parents and medical professionals
by providing support and advocating for awareness of PI.

Meet The PIC Team: Jackie

My name is Jackie. I am a single mother to three amazing kids; a 9 year old daughter and 6 and 2 year old sons. My youngest son was different from the start. He was the first full term baby I had, the first I was able to take home, and the first I was able to breastfeed. I began as a single mother with him, instead of having someone at home to help. I questioned my instincts and knowledge constantly. Within only a few days, I was struggling to keep up a supply and it seemed that he was just never satisfied. As the weeks went on, he was throwing up, refluxing, and just uncomfortable all the time. My previous two children had had issues with dairy as infants, so I did what I was taught and I gave up breastfeeding to trial formula.

Standard formula? Fail. Lactose Free formula? Fail. Soy formula? Fail. Sensitive formula? Fail. I was at a loss. Each one seemed a little better, then worse. He was referred to a GI doctor and diagnosed as having being either allergic to milk and soy or MSPI and severe GERD; two conditions which still, to this day rule his life. He was placed on a hypoallergenic, prescribed formula (Neocate) along with medications. This certainly improved things, and he continued to grow as he was supposed to, despite continued uncomfortableness. At a year of age, he was finally allergy tested (skin pricks)... low and behold, it showed NO reaction to milk! That confirmed that he was at very least MPI - or a milk protein intolerance, as he does not tolerate it, despite being "not" allergic and a confirmed allergy for soy.

Fast forward to 2.5 years old... and his allergies have only worsened. He still does not show a confirmed allergy to milk, but reacts very obviously to it. He has added at least 25 other allergic foods to his list, and was recently diagnosed as having Eosiniphillic Esophogitus. Most of his allergic reactions are delayed, and only show up on patch testing or with trial and error, something that is not easy to put a child with such bad experiences through. He has ended up developing so much pain and continuing reflux problems that he refuses even his formula, the one safe thing he has had his entire life... and is now exclusively fed via a Gastronomy Tube placed in his stomach.

Dealing with allergies at all can be frustrating. Dealing with invisible conditions, once that not all traditional tests can confirm can be even more frustrating. Working with the other amazing mothers through the PIC Foundation has helped me identify some of the problems so that I could either understand other experiences or have a clearer idea of what to speak with his team of specialists about. I am happy to share my experiences with others that are struggling; as we have truly shown that these conditions span such a broad base. All of our children have ended up in different positions or with different overlying problems if not healed from their problems, and we each offer a different perspective and experience

Birthday Month - My Little boy turns 1, with a Protein Intolerance, a personal experience shared by Beth

March 2 - One year check up.  We talk about his development and vaccines, but mainly we talk about food. What foods he can eat.  What foods he can't eat.  What is the food game plan for the next year, that is to continue formula or not to continue formula? We decided to continue formula, and I get a letter of medical necessity from his doctor, and the first official diagnosis of MFPI.
(I have literally changed my mind about continuing formula about 100 times in the last few days.  I want to be done with the formula so bad, to have some normalcy, but I want his nutritional needs to be met! Reading an article about how bad it is for a toddler to be on a vegan diet swung me over to the side to keep him on the formula.  That now is such an important time to make sure his nutritional needs are being met, for development.  But, how do we keep paying for this formula?)

March 5 - Jaiden refused his bottle/formula

March 6 - Called the insurance company to see where we were at with formula coverage.  We sent in our first receipt in January and have yet to hear if they are going to cover the cost. The person on the phone had no clue.  Then after some time she did find our paper work, but of course we filled out the wrong form (even though it was the form that they mailed us), so it took 3 extra weeks for it to process.  But it was finally sent to review on February 27th, and we would have to wait 30 days before we heard anything.  I also found out that each time we ordered formula it would be up for review, and not necessarily covered every time.  I was on the phone with them for over an hour, and basically got nowhere.

In the mean time, we are debating if we can afford to keep him on this formula.  We are waiting to see if it is covered, or if I have to start finding ways to sneak in protein, calories, and fat into his diet.  The stress of trying to figure out how to do that, or even if I can, is overwhelming.  So for now we just wait.

March 7 - Jaiden is still refusing his bottle, and won't even drink it from a sippy cup.   I decided to order the splash, and maybe we can just give him one every other day, just for an extra boost.  That way the stress isn't all on me to make sure he is getting enough of what he needs every day.  I order the splash, and sit down to turn the receipt into the insurance company.  This time I attach the letter of medical necessity, information from the dietician, a personal letter from myself, and all of his past medical records showing hospitalizations due to the intolerance.  This takes me over an hour.

March 8 - Discover that one of Jaiden's caregivers  gave him peas for lunch.  Jaiden is allergic to peas.  Despite all my best efforts to prevent this from happening, it happened.  But not only did it happen once, but it has happened several times over the last two months.  So all of the "failed" food trials, might not have been fails.  He could have been reacting to the peas.  I have to do the last two months all over again. I just want to sit and cry.....again.

Jaiden is still refusing the formula

March 9 - Found a mom online who is selling Necoate Splash for just the cost of shipping.  She has 15 cases for about $128.  It's like buy one get 14 free.  How can I pass up this deal? 255 boxes.  255 days where I don't have to worry about meeting every single one of his nutritional needs.  255 days where I know he is getting the protein that he needs to grow. But, if I spend that money and we get insurance coverage, then I am out $128.  If we don't get insurance coverage, then I am out on a great deal and on a sanity savor.  What to do?

Spent the day stocking up the freezer - squash,  pears, and broccoli soup.  Ran the dishwasher 4 times to make all this.  It took most of the day.

March 10 - Talked to the mom who had all the splash.  She only has 4 cases left.  She is going to hold onto them for me for two weeks.  I need to find out by then if we have coverage.  If not, I need to come up with $64 to buy those four cases by the 23rd.  How am I going to do that? Looked online to see if anything was posted about insurance coverage yet - nothing.
Cooked more foods for Jaiden - Turkey rice vegetable soup and apples

March 11 - Jaiden is still refusing the formula.  The splash gets here tomorrow.  I cannot wait! I have been trying to sneak formula into his coconut milk, but I know he is only getting so much.  I made one more batch of food for him, and have yet one to go.  I know that I will have to do the same thing in 2 weeks, only this time with muffins.

Jaiden reacted to the peas today, mucous poop, fussy most of the day.  It made for a long day!
So far, this is not exactly what I had in mind for his birthday month....

March 13 - After an entire weekend of cooking, I make 35 birthday treats for Jo to bring to school.

March 15- Find out today that formula is covered and the first check is in the mail. I email the mother from online and tell her I do not need those cases of Splash and thank her for holding them for me.

March 16 - Family Birthday Party.  We order dinner, a fish fry.  But of course have to make a separate meal for Jaiden. That morning, I made two separate cakes.  One for Jo, which is beautifully decorated.  And cupcakes for Jaiden, which look so sad next to Jo's cake.  He wouldn't even eat his. :( I tried to ignore the fact that Jo got such a great cake, and Jaidens, well to be honest, was just horrible.

March 17 - Birthday Party at Mcdonads. All the kids gather around and eat their meals, while Jaiden is left to eat his fruit and veggies.  He seems happy, he is not old enough to notice yet.  All the kids get ice cream for a birthday treat, Jaiden gets an allergy friendly cookie.  He loves them.

March 18th - St. Patricks day parade.  The day begins by preparing and packing enough safe foods to get us through the whole day.  I buy the whole family sherbet.  I checked with the stand to see the list of ingredients.  Surprisingly he had the ingredients for each flavor, and only one flavor had soy in it. However, he used the same scoop for each flavor, can I risk the cross-contamination? The answer is no.  I bring the sherbet back over to the kids.  Jaiden cries because he wants some.  I just  throw mine away.

March 22- Jaidens actual birthday - Allow him to taste some chocolate coconut milk ice-cream.  He seems to really like it.

March 24 - We finally break down and buy a deep freezer because we are running out of room in our regular freezer for all his homemade foods.
He reacts to the coconut milk ice cream.

March 25 - Today I made 5 dozen muffins, each a different flavor: blueberry, apple, pumpkin, chocolate, and banana.  I completely made up the apple and chocolate recipe and they turn out great!

March 28 - Try to make homemade chocolate candy for Jaiden for Easter.  It turns out awful.  What am I going to put in his Easter Basket?

March 30 - Corn trial begins.

Food for Thought, a personal account shared by Beth

 Last night I was thinking about how I am not going to be able to make a cake for Jaiden's first birthday, and it made me feel a little sad. But then I started to reflect on my journey with this child over the last year, and one particular memory stuck out in my head.

Now usually when I start to think about all the stuff that happened with Jaiden, my head tends to go to the ambulance rides, the many needle pokes to get an IV, the blood transfusion, the scopes, my inability to nurse him, or even the moment I got to fall asleep with him in my arms when it was finally all over - my first moment of peace with him in weeks. But that is not where my head went last night. My head went to a moment I have not thought about once since it all happened.

Last night I could see myself sitting in the ER waiting room. It was the FIRST time we were in ER. Both my husband and I had debated about bringing him because we were told over the phone that he was probably dehydrated. During both my pregnancies I became dehydrated, so we knew the drill....4 hours IV fluids then go home.  No big deal.  So we debated if we wanted to put him through that stress when we could just try to really push fluids at home. But there was the blood in his diaper.....that was a concern we just couldn't ignore and decided to take him to ER.

So here I am in the ER just about 4 days after giving birth. I remember carrying him in by myself, and struggling with that, as my husband parked the car. I filled out the paper work and sat down. Jaiden was asleep in the seat and sitting across from me was an elderly couple. The last thing I wanted to do was to have small talk, yet the elderly lady came over to see the baby.  I mean, I get it, who can resist peaking at such a new baby?

She asked if we were here for the baby. And I explained, as positively as I could, that he was just a little dehydrated and he was going to be just fine.  I'm not sure if I was trying to convince her or myself of that.  My motherly instinct knew at that point that something wasn't right, and that it was more than just dehydration. It turns out that I was right.

She went and sat back down when my husband came in and him and I sat in silence and watched are 4 day old baby sleep in his car seat.

Why did this memory so vividly pop into my head last night? I think because that was the final moment before it all began.  The final moment before all the chaos and worry began.  The last moment before things like blood count, hemoglobin, amino acid formula, food trials, and Protein Intolerance became part of my regular vocabulary. The final moment before my world, and his, would be flipped upside down and we would have to work every day to find what our new normal would be.

So now, almost a year later from that time, I think we are finally getting a hang of this thing called PI.  We are finding ways to make things easier for Jaiden and for the family as a whole. So what that he doesn't get a cake for his birthday? He is here, he is happy, he is healthy! My life is better every day that he is in it! He has given me a strength I never knew I had and he has taught me more about life in the last 10 months then I have learned in the last 30 years! Plus, there is no greater gift then hearing him laugh, cake or no cake

'To my family' , a personal account shared by Beth

My son has a severe protein allergy to milk & soy. This is not the same as being lactose intolerant.  This is not the same as colic.  This is a severe allergy that has almost taken the life of my child twice. This allergy is time consuming, life consuming, overwhelming and frustrating.  People seem to think it is as easy as just not giving him milk or soy, but it is not.

It is label reading.  It is shopping at 4 different stores to get all of his safe foods.  It is frustration of not finding any foods he can eat because soy is in everything.   It is the disappointing trips to the grocery store, and returning home yet again empty handed for this child. 

 It is calling and being on hold with food companies for what seems like hours to be 100% certain that the vitamin E or natural flavoring is not soy based, because soy fat ingredients do not require labeling for allergens.  It is constant cross contamination research to check what foods are run on the same line as foods made with dairy and soy, because I will not let a drop enter his body.

It is constant research, constant planning, and constant thought about what foods to try next and in what order.  It is the facts about food constantly running through my head. 

 It is constant recipe search, trying to find new ideas for the same foods search, and recipe experimentation. It is the constant meal planning. It is food journaling.

 It is frequent trips to the store, since everything needs to be made from scratch.  It is the steaming, blending, storing, cleaning, and repeat, multiple times a day.  It is the not having the luxury to do "fast food" ever, even on those days where you just need a break from cooking.

It is trying to explain to his sister why she can't share her cookie with her brother.  It is the look on his face when he wants to try just a bite of what you are eating.

It is expensive! All his foods need to be organic, natural, and whole.  It is having to give up the luxuries that are my sanity in order to pay for hypoallergenic formula, because each can cost $39 and one can lasts about 48 hours.  Although expenses are the smallest of the issues because his health is more important than anything money can buy!

It is the constant wonder if a behavior is due to an allergy or not.  He is fussy: is he tired or reacting? He is not eating:  is he full or is he reacting? He had 3 dirty diapers today:  just an off day, or is he reacting?  He is sleeping a lot today:  is he just tired, or is he reacting? He seems uncomfortable:  is it his teeth or is it his stomach? It is the fact that your heart always goes to the allergy, and your head has to try to talk your heart out of it.

It is the poop checking.  Every day for 7months, poop check.

It is the not having anything in common with your friends anymore, because you eat, sleep, and breath this allergy.  It is talking to people in online support groups that you have never met before more than talking to your friends, because they are the people that truly get what you are going through.

 It is the prevention and worry of cross contamination in your own home. It is the little decisions about food that have turned into monstrous ones.  It is the selfishness of wanting to introduce more foods then you should for convenience, and then the guilt of even thinking of that.  It is the constant thoughts of food running through your head that have taken all the joy and fun out of introducing them to your child.

And the worst of all is the constant anxiety that you are going to put your baby through a reaction again if you don't do everything right.  It is the constant fear that overwhelms you every time you put something new into your child's mouth.