PI mom with a PI daughter, a personal experience shared by Jessica

There are only a few things I regret in life and I am barely realizing them now that I have a child with a Protein Intolerance and Reflux. I always had heartburn, hiccups, stomach pain and you name it, but never decided to go into my doctor to find out what was going on. I just felt I needed to suck it up and deal. When I eat certain foods I get extremely sick after and feel horrible with stomach cramps and the whole nine yards, but again I felt I just needed to deal with it. I had horrible seasonal allergies but instead of going to an allergist I took Benadryl as needed. I have severe food allergies to a few foods but instead of getting confirmation  I just avoided those foods.  My father has an IgA deficiency and instead of getting tested before I conceived to see if I was a carrier I let the concern fall to the wayside.

Well after having a child that has all of the above symptoms I honestly regret NOT going to my physician and finding out what could be wrong with me and treat it. Maybe if I did find out I would have had a better sense of what was going on with my firstborn. Instead, she was the one who endured all the tests, sometimes painful, in the name of finding a diagnosis and treatment. It wasn’t until the past few months that I have decided I need to finally take care of myself. But I truly regret that it took this long and a beautiful daughter to get me to this point.

I have reflux, Delilah has reflux. I have a Protein Intolerance, Delilah has the same. I have seasonal and food allergies and like the other ailments, so does Delilah. If I had known some of my diagnosis’s when I saw them in my daughter I could have had a better idea of what could be going on. I know, I know, it might not have mattered but I will never know. I feel terrible that I had to put Delilah through countless tests trying to grasp at straws in finding a diagnosis that fit her. But, like her mom she never has fit any mold or has been a “textbook” case. It can be very frustrating when you don’t know what is wrong with your child and its only natural to put yourself and your health on the backburner.  One thing, of the many,  I have learned the hard way that your health and finding out what is wrong with you is more important than you think.

I  try not to think too far in the future and try to get things under control in the moment, but at the  same time I want answers and I think “if I eat this or Delilah eats that will we be sick?” and then I can’t help but wonder what the future will hold. I go in on Tuesday to have an EGD and colonoscopy (which Delilah has had) so if she can endure it so can I. I’m just hoping mine will give us some more answers then hers did as I am not on an elemental diet. My fingers are crossed that whatever is going on with me will lead to a possible diagnosis of Delilah without her going through more testing! I would much rather be the pin cushion than her and this is finally my chance to not have any regrets

The Ballad of the Banana and B...personal account by Amanda

For anyone who knows my daughter Bridget, it seems impossible to think that bananas were ever a questionable part of her diet. They were her first safe food and still they are her first choice for any meal. (I swore for a long time that she was secretly a little
monkey. . . ). But they certainly weren't a clear pass and it took much tinkering with her beloved bananas before the love between baby and banana was mutual.

It started with Gerber. We were living overseas and qualified for WICO (similar to WIC but run by the Department of Defense). Through WICO, we got TONS of free baby food. I had fully intended on making my own but I thought I would try the Gerber and perhaps alternate between the two (I hate turning down free stuff!). She loved bananas from the get go, but after months of other food fails, worries about cross contamination and never any baseline in sight. . . we reconsidered whether or not free is always best. I stored up the Gerber food for donating and began my homemade baby food quest, which at that point only required one recipe. Bananas!

I picked some up at the local Japanese fruit market, made sure they were nice and brown speckled, and mashed them. She vehemently refused them. Since she already had texture issues going on, we chalked it up to this. But once she did eat the bananas (watered down with breast milk), we were met with lots of diarrhea, rashes and a very fussy baby. I was puzzled. So my friend K suggested cooking them. Really? I thought. Well, I broke out the skillet, sliced the banana lengthwise and cooked it on low heat until it was brown and syrupy. She absolutely loved it and gobbled it right up BUT the next day found us deep in diarrhea yet again. UGH. Since we had already had some delayed reactions under our belt, bananas were starting to make me wonder. Again, I talked to my friend K and she suggested changing the pan. I had been using the same skillet that my husband and I used for eggs, his bacon, grilled cheese. . .etc. (We have since had egg, pork, and wheat fails. Dairy is a big question mark.) And of course it was washed between uses and washed well, but you know how some foods leave a tiny, tiny residue? For us, this residue was just enough. I went out and bought Bridget her own skillet and voila! Happy baby, eating happy cooked bananas and no unhappy nappies!!!!

This experience really opened my eyes to trace contamination and how sensitive these little ones can be to changes in food proteins. From that point on, I cooked everything for her, whenever we would trial foods, even if they weren't foods typically cooked. We also use her own specific cookware and utensils. It by no means saved us from fails, minor or severe, but I do think it helped us to find foods that might not have been tolerated otherwise, such as pears for instance. At 21 months, I can now give her as much as 1/3 of a raw banana or a few slices of a fresh pear without any trouble, but if I increase the amount or give her that much every day, she has diarrhea, trouble absorbing foods and is miserable for a few days.

As parents, I think it is important to find our child's threshold for a food, if it can at all be a pass. Sometimes we get lucky and all we have to do is change our food preparation and the ways we think about serving foods to our children.

Feeding the Milk/Soy Protein Intolerant (MSPI) baby, Perspectives by Heidi

Breast milk remains the best option for infant feeding.  In addition to its traditionally known immunoprotective 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 ready-to-feed.  And, as alimentum ready-to-feed 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 ready-to-feed, nutramigen, 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 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, sunbutter, 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?

Protein Intolerance and "PTSD"...perspectives by Dominique

It sounds strange to say PI can cause Post Traumatic Stress Disorder (PSTD), but this is the only way I can describe it. Parents of kids with PI, FPIES, EGID or GERD may be able to relate to this phenomena. Let me explain.

The past 16 months have been tough to say the least. Some days I didn't think I could make it through. Somehow a baby crying for days on end has a way of making you feel.....well I can't even put it into words.....it just felt as if time and the world stood still and you could do nothing to help your child but cry with them.

Hayleigh had trouble eating (I would refuse too, if it felt like my chest was burning from the inside out and my stomach hurt every time I ate). She ate 2 to 3 ounces every 2 to 3 hours until she was about 8 weeks old. Then she stopped eating well and started having sandifer's syndrome episodes.
She would scream after 1/2 oz and contort her body in weird postures. I would have to feed her every hour or less and the whole process would start all over again. I would be tense and eventually it was wearing on me. The constant pain with eating was hard on us but worse for poor Hayleigh.

The other issue related to my "PTSD" is sleep. Or intense sleep deprivation while trying to get her to sleep. Unless you have a child in constant pain you may never understand our battles with sleep. I have never been one to think of co sleeping. I was always the person trying to talk parents out of their co sleeping habits. Well, well, karma! We now co sleep, yes my husband, Haleigh, Heath, our poodle and myself all on one bed, sometimes with Heath on his tucker wedge (which takes up half of our king size bed). I am currently thinking of maybe getting a bed bigger than our king size if it exists. I cannot remember the last time my husband and I slept next to each other. The current layout is Heath in the middle on his wedge with me on the edge (I get about 12 inches), Hayleigh next to the wedge, the dog curled up in the middle of the kids and my husband literally hanging off the edge. Many a night I wake up to go to the bathroom and I have to wake him so he doesn't fall off. Anyway when Hayleigh was about 10 months old and got to big for her wedge we attempted to move her into her own room. Until that point she had slept on her wedge in a pack and play in our room. However she was getting up every 30 mins to 2 hrs and we wanted to try the cry it out method in her own room. We had no idea she was in pain and it was keeping her up. Needless to say a week later her crib was in our room for good and she was in our bed every night once we went to bed. Even now she isn't in consistant pain as she was then and thankfully she doesn't wake up every 30 mins any more, but she still wakes every 2 to 4 hours to have a bottle and the only way for us to get sleep is to have her in our bed. So I am totally for co sleeping if it gives me some sleep. Somehow I keep getting off topic! The point I am trying to get to is that putting her to sleep has always been hard because we had to have her up right 30mins after eating and even then if she fell asleep and we put her down she would wake up crying. Or she just wouldn't be able to settle to sleep. Sometimes I would sit in the glider for 2 hrs trying to get her to sleep. Even now she fights to fall asleep, maybe she has PTSD from all her pain.

When she was 6 months old I found out I was pregnant again and the first thing I did was cry. I cried because what if this baby was the same? What if no Dr. could tell me why my baby was in pain again? How could I help another baby if I can't help Hayleigh? I was terrified of going through all this again. I was terrified of the unknown; of putting another baby through all this pain.

Family and friends all told me "don't worry this baby will not be like Hayleigh". Over and over again I had family sing that song to me, but deep down I knew. I had done all the research, I had spoken to other families.

Well we are now going through the same issues. Hence my fears have become a reality, however I am working through my PTSD of feeding and sleeping.
Every time Heath screams while I feed him, every time I hear his stomach make that noise warning me that something is bubbling, every time the burp or vomit is followed by screaming, every time he cries and cannot fall asleep, every time he repeats the cycle we have come to know as normal I remind myself to release the tension in my shoulders, to let them fall, I remind myself to breathe, I remind myself I am doing all I can to make his life as comfortable as possible right now. I remind myself that we will get to a better place and it is not my fault. I remind myself to enjoy him as much as possible because soon he will be walking and talking and I need to relax and enjoy him :-)

A Mother's Instincts....a personal accont shared by Joy

Have you ever had an instinct? An instinct that begins as a gnawing, then grows into a raging burn. A burning instinct that something is wrong, your baby continues to get sick from the very foods he is supposed to thrive on. I did. I am a mom of a little boy just diagnosed with FPIES. And that burning feeling now? Extinguished. My instincts? Stronger than ever, guiding me as we navigate through the murky waters of our new world created by something called FPIES…..
So begins my blog journaling and sharing my story.   I will always keep this as my prelude.  That raging mommy instinct was a fire burning inside of me.  That fire has served me as we searched for what was ravaging my son’s body for so many months before finally stumbling across FPIES.
Sharing our story and experiences has become my therapy, my mission, my privilege.   Raising awareness is my goal.
Our story, from birth to diagnosis.
I am a mom of 4 boys. I’m not new to this mommy gig. Maybe the early signs should’ve been red flags: bringing him home from the hospital and having blistering diaper rash, eczema that started in the first week of life, gassiness, and explosive diapers. But I’d been through all of that before, our first born had milk protein intolerance with allergic colitis at 8weeks old, colic from 3-16weeks old and reflux with throwing up until he was19 months. We had had our share of crying, gassy days filled with projectile vomiting. So I wasn’t alarmed when I began to see all this again. I did see all of this in our 3rd son, but he was only milk protein sensitive. So, I thought I was going down sensitivity road again. I was exclusively nursing, as I had with all my other boys. I knew what I had to do so I started changing my diet to find the right amount of dairy my little guy could tolerate, this seemed to help some.

He was only a few weeks old and the middle-of-the-night-wide-awake times began…this one was new but again I wasn’t too alarmed- just considered myself lucky that I had had 3 good sleepers before him. Also started to notice, although we enjoyed the cuddle time, that the little guy liked to be held upright for naps- he would wake up out of a seemingly deep sleep if we laid him flat. So, we created a “nest” for him in his bassinet and crib – with a wedge and a broken down bouncy seat for soothing vibrations (that he seemed to respond well to) and this helped us get some sleep…some nights.
It was approaching time for me to return to work and so trialed him on some formula, for supplements as needed (unsure how my production would hold up). This brought on projectile vomiting from the first ounce. We chalked it up to weird coincidence and tried another ounce in a week or so, only to have more vomiting. Based on our past experiences, we recognized that he wasn’t going to do well with regular cow’s milk formula at this young age. My supply was holding up so we decided to just hold off on supplementing with formula at this time.
But now, at 3mo. old we started to see a colic behavior creeping in- each evening seemed to get worse. We were very busy so we thought he was just picking up on the stress in the house of me returning to work, school starting, etc. My husband works 24hr. shifts, so our 9yr.old steps up to be the "man" of the house and help mommy out when he is on shift. He would tried so hard to help out, it broke my heart and made me so proud all in one breath. It took his words a month or two later, saying “Mommy, what happened to him?” for me to start to really realize I wasn’t the only one noticing that his fussiness was getting worse.

I had started to change my diet around more and noticed immediately if I had more than ½ cup of dairy in a day, I would have a wide-awake, gas filled little baby at 2am. So, I limited my dairy- not having any straight dairy but reluctant to pull all sources out at this point- still not knowing if it was sensitivity or full intolerance and since we hadn't seen any bloody stools, I was convinced he had a sensitivity like son #3. I did notice keeping control of the dairy was helping some but some days it was back to the same, wondered if he was affected by other things (?wheat) in my diet- speculating that with my IBS, he was getting incompletely digested proteins through my breast milk.
We were approaching 4mo,so we decided to trial some rice cereal to see if the thickener of it would help with what we speculated may be some refluxing issues. This seemed to work for awhile, but that would be the course of things to come for the next few months...we were slowly losing the grasp on what was really affecting him and what was really working. We turned back to the suspicion that my production was low, so we decided to trial another formula- this time trying soy. Soy brought on gassiness, stomach cramps, reflux, burping, and a chest congestion that sounded so badly after 5weeks, I feared he had croup or pneumonia. After almost 2mo of sporadic 2oz.supplemental soy bottles, we decided he must be building up sensitivity to soy. We stopped soy. He also was not accepting new foods well, and beginning to refuse many meals.
Our little guy was going downhill fast, we needed to find something that would help take away all his pain as well as nourish his body. We moved on to trial Nutramagin, followed a 100% no soy/no dairy diet (for me and him) while I continued to nurse him, then Nutramagin AA, then a reflux medication. A week on the new medication and his stomach aches doubled and his appetite decreased. His body was not responding to any of our many efforts and he was getting so sick and his pain cries were so intense.

That instinct? Now burning flame in the pit of my stomach. Our little guy was experiencing pain day and night. It was getting more heart wrenching to see....stand by and not be able to do anything, or enough of anything to help him escape this now growing constant pain.

We received a GI consult with recommendations for a new reflux medication and an elemental formula (and to stop nursing). We tried the reflux medication right away but it made him so sick within the first doses and he started to refuse to eat, and we then ended up in the hospital where we got him eating the new elemental formula- Elecare, but this only brought on daily throwing up. We waited for his stomach to adjust to the new formula. We proceeded to an upper GI and then to a Endoscopy and sigmoidoscopy work up hoping to find out what was going on inside our little guy that was keeping him from tolerating the foods designed to nourish his body. The tests confirmed that he did not have Celiac Disease or Eosinophiliac Esophagitis but something was still not right with our little boy. We switched formula’s from Elecare to Neocate (another elemental formula) and the daily throwing up slowed down. We tried Neocate Nutra and the violent vomiting began. We would watch as he emptied the contents of his stomach, he was so sick. Then we connected it to the Nutra, we stopped this and the violent vomiting stopped…unless he got a crumb from the floor dropped by his brothers having a snack. He remains so super sensitive to any ingestion of foods.

We knew something was still not right…months on an elemental diet we thought he was ready for re-introduction of foods. And where do you start reintroduction of food? Rice? This brought on days of vomiting and agitation. With this, we begin to make some connections in the literature: could it be FPIES? We went to the next food, something he enjoyed before we stopped food- sweet potatoes. This brought on many days of colic and runny stools and everything the same as rice, except the vomiting- all from just a few teaspoons of pureed sweet potatoes on one day. This was getting to be too much again. We had consulted with a RD (Registered Dietitian) and she brings up a possible connection with FPIES. Here I am coming across this FPIES again. We continued reading the literature and connecting the commonalities. Have we finally found something that could finally explain what has been ravaging our son's digestive tract?

Where would we get an expert opinion? I dove into the world of online support groups and found and connected with other mom’s who echo my son’s experiences, echo the food sensitivities and reactions to foods, echo the anxiety of having an ill child with a syndrome of unknowns….many have gone to this place called CHOP- what is CHOP? I soon find out….Children’s Hospital of Philadelphia, and they have a program for Eosinophiliac Esophagitis and in this program they have become one of the leading experts on FPIES. FPIES is essentially Eosinophiliac Esophagitis ruled out. And that is what Samuel had- something that, to his doctors here, looked and acted like Eosinophiliac Esophagitis but scope had ruled this out.

We call and get their earliest appointment, and go to PA with much hope and anticipation for some direction on how to proceed. The experts at CHOP recognize the signs and symptoms almost immediately. And our son is diagnosed with FPIES, a mere 4days before his 1st birthday, our journey now had direction, but the fight was just beginning to find the right care for his illness. I will continue to share my experiences in future posts about instincts, and advocacy for a child….both truly essential components for a child with a Protein Intolerance.

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