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.

www.fpiesmudpies.blogspot.com

She is Allergic to what? Personal account by Dominique

When I say Hayleigh is allergic to ALL food, I always get the "blank" look and the question "what do you mean all food?"I dread the question of what Hayleigh is allergic to when we are out with other people. They can never wrap their brain around the idea that someone can be allergic to food. Then some people get upset and they act as if she has a death sentence. My heart then sinks at the thought of having to convince another person that I am not crazy and my child is going to have as normal a life as possible. This has occurred with family, friends and complete strangers. I have a harder time dealing with the people who keep wanting me to give her food because this is what a "normal" infant or toddler does: they eat. People do not understand the pain that food causes my daughter and NO PARENT wants to put their child in unnecessary pain. I have had people question my doings and even had people tell me things are all in my head. However Protein Intolerance is a real allergy and it is not pleasant for the sufferer.  Hayleigh has no one diagnosis her Drs call her MPI (Multiple food protein intolerant), FPIES (Food Protein Induced Enterocolitis Syndrome) and last visit EGID (Eosinophilic Gastrointestinal Disorders). These three things are all interrelated and just variants on a spectrum from what I understand. The allergic reaction takes place in the digestive tract and is Tcell mediated. Every 18 months the Tcells in the digestive tract shed and her reaction to aparticular food at that time may reoccur or it may be she can tolerate thefood. These disorders are also thought to be autoimmune disorders.  Autoimmune disorders tend to run in my family so this makes sense. My motherhas vertilogo and Addison's disease both of which are autoimmune disorders.


So lets go over the questions and get the answers straight:

What is your daughter allergic to? Everything we have tried so far.

What does she eat then?  She is on an amino acid based medical formula. The proteins in it are totally broken down so technically her body does not have to interact with any proteins. She also has one safe food: baby food jarred carrots (she cannot eat carrots we cook)

But she doesn't look as if anything is wrong with her. No she doesn't because we work hard at her get enough formula. During the day she eats 6oz every 2 to 3hrs and at night she eats every 3 hrs.

Will she out grow this? We have no idea. However the more foods a person reacts to the less likely it is they will outgrow this disorder. Hayleigh has reacted to over 30 foods so her chance of outgrowing this looks slim. Of course if she does we will be overjoyed, but if she doesn't she can still lead a normal healthy life using the formula she is on.

She is Allergic to What?

Holiday Hullabaloo!...perspectives and insights shared by Amanda

It's that time again! Holiday season! No matter what holidays you and yourfamily celebrate this year, all gatherings are bound to include lots of family, food, and happy memories to be made. But if you are like my husband and I, you may feel a little anxiety over the foods (safe vs.unsafe, cross contamination) and the family members (how to explain PI and how to enforce food rules in order to keep everyone safe!).


I hate feeling this way-- I really do. I grew up with a huge extended family (my daughter is the 40th great-grandchild and there are 10 moreafter her, more to come as well) and holidays were such an amazing time--lots of gatherings, fun, food, family. Everyone was always included!  Although Bridget's list of safe foods is slowly growing, we are still actively avoiding at least 20+ foods due to former reactions, patch testfails, and/or a highly allergenic nature, not counting all of the foods that we have yet to trial. Many of the foods we are avoiding are big staples-- wheat, dairy, soy, egg, etc etc. So what is a mama (or daddy) to do? This is also our first holiday season back in the states since 2007,so we really want to see family and enjoy all of the get-togethers. We have a plan:
For every gathering, we will have a quick and simple way of briefing everyone at the party about Bridget's food concerns. We will keep it simple and to the point-- no one other than * insert safe people's nameshere * will give ANY food or drink to Bridget. No one will share any utensils or cups with her. In case anyone sees her eat something off of the floor or off of another person's plate, they are to tell myself or my husband immediately, even if they are not quite sure what she ate (these little ones are fast!), even if it is "just a crumb,." We all know what"just a crumb" can do to our little ones' bodies.
For every gathering, we will determine who is a "safe person" for Bridget,and she will never be in a room without that person by her side. "Safepeople" will be fully aware of what to avoid and what to do in case of an accidental exposure. We will also determine if anyone at the gatheringcould be unsafe, meaning a person who (a) does not believe the FPIES diagnosis or (b) is careless and will not acknowledge our requests. There are fortunately very few people that we would consider to be in this category!
For every gathering, I will bring two dishes to share that are Bridget-safe and will be sure to have separate servings for Bridget, just in case of cross-contamination (i.e. someone uses the same serving spoon for Bridget's pie as they use for the chocolate cream pie. Yikes!)  I think it is important for others to try her foods, weird as that may seem.  I also think it is important for her to learn that even though her foods are different, we can still share them and they can still be appreciated by others. To further reduce the risk of cross contamination, we might try using utensils that are labeled.
For every gathering, there will be a box, decorated by Bridget (she is my little artist!), that contains safe treats. I don't want her to feel left out. She is little and won't understand why the other children can have something that she can't have. If there will be cookies, our box will have cookies too, for example. We will also have other snack foods and allergen-safe craft supplies (store bought play-doh, for instance, is not safe for us, so we make our own). I will decorate all of her "treats" in a holiday fashion too-- shaped cut-out cookies, frosting for her muffins in holiday colors, and so on. The box will also include at least one"back-up" sippy cup, plate, bowl and set of utensils. I can't tell you how many times another little one has mistakenly grabbed Bridget's sippy and take a swig. Having a clean, fresh cup has always been something I keep on hand.
For every gathering, there will be a separate ER bag ready and in a location known to Bridget's "safe people." We will know the route to the nearest ER and we will have appropriate documentation from her docs regarding her diagnosis and what the ER staff should do in case of a reaction. All insurance cards will be accessible, as will be a list of trigger foods and trigger medications.
And as for the fun. . .  When we are at gatherings with other children, I will plan some non-food related activities for all to enjoy. Holidays are often focused on food, but PI forces us to sometimes look beyond this focus and find alternate ways to celebrate, ways that are just as meaningful, or even more so. Simple games and craft projects can keep the kiddos busy and make those lasting memories for years to come!
It may sound complicated, but once everything is in order, it really isn't. And even if it does complicate the holidays, it is a means to an end--- the most important thing is for my big girl to have fun celebrating and enjoying the holidays like every other kid, without having to make an unexpected ER visit and without having to recover from a reaction while everyone else enjoys the festivities. That will truly be a reason in itself to let loose and celebrate!

Lana Erickson's MSPI Words of Wisdom...insights shared by Rhonda

Being a parent to a food intolerant kiddo is a tough road to navigate, as anyone who has been there is well aware of.  Sometimes the biggest help is reassurance from others who have been there to build your confidence that you are doing the right thing.  I wanted to share some words of wisdom written by Lana Erickson, many of which I have repeated to myself many times through our journey.  Lana is a long time supporter of parents with food intolerant children, who has been there herself.  She has been a huge support for my son and I over the last year and I am very grateful for that!  Please note that these are generalized statements and are not intended as medical advice.  As always, please consult your doctor or pediatrician for specific medical advice.

Lana’s Words of Wisdom:

Trust your instincts.  As moms, you know more than you think you know.
2)   It's always okay to get a second opinion (or 3rd).  As the only advocate out there for your child, it's your right and your duty to try to find the best answers and the best care for your child and your family.
3)   Mucous in and of itself is not a terrible thing.  We all have mucous in our stools; we just don't always look ;-).
4)    If it's not broken, don't fix it.  If your baby is happy, healthy, and growing, who cares if he/she doesn't have perfect poo.
5)    (Especially to any TED mommies) Breastfeeding isn't worth it if you are not physically/emotionally healthy enough to take care of your child.  I am totally of the mind that breast is best, but if you are dropping weight so rapidly that you are experiencing significant health problems, or if you feel like you are resenting your child for a restrictive diet to the point that it's interfering with your ability to care for your child, then you need to get help.  Every mother of a food intolerant child I have had the privilege of knowing, including myself, has dealt with some grieving and/or depression as a result the symptoms and restrictions of food intolerance. If these feelings become overwhelming to you, it's okay to get help. You are the best mommy you can be when you take care of yourself too.
6)   Time truly does make things better.  There is not one family I've known that hasn't felt that their situation has improved over time.


I cannot even explain how many times I had to remind myself of #3 & 4, in the quest for the perfect poo!  It was so tough to find a stopping point on eliminating foods when I hadn’t resolved every symptom.  In reality, no matter what I eliminated, Sebastian didn’t have “normal” stools until he was eating solids regularly.
Even in recent days, I still have to remind myself to trust my instincts.  Over the last week, Sebastian was so fussy, not sleeping well, hitting and just uncomfortable.  There were so many variables in there with the Halloween treats, some new ingredients, a cold, new reflux medicine (which he was spitting out most of his doses), some recent additions in my diet and having Dad out of town.  Even on top of that list, who knows what I missed or any accidental exposures at daycare that I may not know about.  It’s so easy to start panicking and cutting everything back out.  Instead, I just trusted myself that it was a reflux issue, not an intolerance issue.  I got Sebastian back on the Prevacid several days ago and all seems to be well again for my little guy!  I hope that these words of wisdom will be as helpful to others on those rough days, as they have been for us.

Hidden sources of allergens in vitamins, supplements, flavorings, additives and fortifiers...perspectives and insights by Joy

This article comes on the tails of last weeks post about hidden sources of proteins in medications and vaccinations. This week, I face this same challenge.

My son could use a multivitamin but he is corn intolerant. To the unknowing medical professional, finding a non-corn syrup based product would be corn free right? Wrong. Many vitamins are derived from corn. A good example is Vitamin C (also labeled ascorbic acid), when you think of Vitamin C, what comes to mind? A nice juicy orange?...Unfortunately not. The vitamin C added to foods to make it "100% Vit.C" is a corn derived chemical product. This is also true for most citrates- (potassium citrate, sodium citrate, calcium citrate). Corn is in everything.

I know not everyone has corn as a protein trigger but my eyes have been opened wide because my son does. But whether you have a corn intolerance, or your intolerance is dairy, soy, wheat, or many others- ingredients need to be checked one by one, and not just labels read.  Federal law mandates the top 8 allergens be listed clearly on a food label if the food contains one of them (milk, soy, wheat, eggs, peanut, tree nut, fish, and shellfish ) but this still does not assure all ingredients are safe for the very sensitive allergenic individual, and does little for assurances of Protein intolerances that react to minute amounts of trace proteins in vitamins and preservatives, "natural" flavorings, hidden ingredients in non FDA regulated "organic/natural" foods/supplements, and fortifiers meant to replace actual nutrition (such as fiber added to call a bread product to call it multi-grain in an attempt to fool the consumer to believe it is as healthy/healthier than whole grain products). Every single ingredient needs to be accounted for with an allergy response as sensitive as something like FPIES, which is a severe form of Protein Intolerance; much in the same way extra precautions are taken if you had a typical IgE anaphylactic response to foods. "Processed on the same equipment" takes on a whole new meaning (of stay away caution); natural flavors that are anything but natural (typically chemically derived from wheat, soy, corn sources); fortifiers of so-called vitamins into foods that would other wise be void of real nutrition.

Recognizing all names for your individual intolerance is very important when learning to read labels for allergens. Cooking from scratch and natural sources is advisable, but doesn't take away your risk. Foods that aren't required to be labeled are: fresh produce, fresh meats and certain highly refined oils. Also foods that come into contact with an allergen during growing, harvesting or manufacturing as well as the possibility of trace amounts (although some companies do list this, it is not required). Trace amounts would be a protein found in syrups or oils, these are typically processed so that the proteins have been removed making them hypoallergenic (a wise mom once pointed out something she was told by a fellow mom/scientist - hypoallergenic does not mean non-allergenic, any food has the potential to be allergenic to a food-allergy prone individual). Fresh produce typically has a wax spray (yes, even organic can) on it that can be either corn or soy derived, proceed with caution if soy or corn are problematic. Fresh meats can come from animals that have been fed high amounts of soy or corn grains- this too can be problematic for the highly sensitive that react to trace proteins. Syrups and oils have been processed to remove the protein component and yet companies will even admit that trace proteins can still be present. Again, if highly sensitive individual can react to these trace proteins.

For more information on food labeling visit the FDA website: http://www.fda.gov/Food/ResourcesForYou/Consumers/ucm079311.htm

Know your ingredients. Know your vitamins, supplements, flavorings, additives and fortifiers. Know your food. Manage your allergies and intolerances.

Trust your Instincts. You Know Your Child Best! from American Baby Magazine November 2010.

We at PIC, find so many PI parents who are amazing advocates for their children!  Until we can get more research funded & in the hands of the medical community, WE HAVE TO BE!   It is great to see publications & doctors encouraging parents to take an active role in the health care of their children!!

American Baby, November 2010, Page 48

Trust your Instincts.  You Know Your Child Best! Could your baby's doctor be wrong?  Scary but true: More than half of pediatricians report misdiagnosing a child once or twice a month, and nearly half admit that a few times a year those faulty judgements are serious enough to cause harm, according to a recent survey from Texas Children's Hospital, in Houston.  "When it comes to a baby's health, parents are the best advocates," says Geeta Singhai, M.D., the study's lead author.

She shared her pro tips for getting your Kiddo Top care.

Press for Answers.Trusting your child's pediatrician is important, but it is okay to ask him to elaborate.  And when you don't understand probe until you do.

Don't be Shy."You shouldn't worry about offending your pediatrician," Dr. Singhai says.  "View her as person with whom you can collaborate."

Seek a Second Opinion.Receive a diagnosis you're unsure about? Your doctor can connect you with a colleague in practice.  Or dial a different doc.

How protein Intolerance can make even the least modest of us shy about nursing...a personal account by Dawnetta

It has been a while, but I will be there again VERY SOON; I was reading some comments on a mom-networking site, remembering how difficult it could sometimes be to nurse in front of extended family.  I am totally open in front of my own parents and sibling, because we are a very open family, but we typically spend almost every weekend at my in-laws & with my first child, I would usually go in another room to nurse.

Nursing & getting comfortable with it was hard work and not to be underestimated when you are working with a child who is dealing with Protein Intolerance.   Especially in the beginning stages, when nursing is generally more of a struggle, but even at 10 months old, I remember we would have to change breasts back and forth (lactation consultant no-no / PI mom reality) & she would often suddenly detach, squirm, fuss, or want to play instead, leaving me very exposed and would react like a caged animal if I put a cover over us.  Add the emotion of every time your baby seems a little disinterested- having to wonder "did I somehow eat something I should not have?  Is she in pain?" Which often led me to - "would she be better off if I just stuck with formula?"

Due to her inconsistent interest in eating, & my inability to pump (will be talking to lactation consultants about this soon), I did not produce an abundance of milk & we would sometimes need to supplement with Neocate which she "tolerated."   I feel confident that I gave her everything I could in terms of committing to nursing, and understanding our diet to provide her with digestible milk.  This was the right choice & worthwhile for us,  but is not possible for many moms of Protein Intolerant children who's lists of foods they can tolerate are shorter, or who simply fail to thrive while nursing.

In retrospect the nursing stage is such a short and wonderful time and being a mom, of even a healthy child, changes so many priorities in your life.  I am thankful we were able to share that time!  I don't think twice about the conversations i missed or how we would visit people just to spend half my time off alone with Lilly.  The thing about family is- they will probably be having the same conversations next year or next week if you see each other often enough!

On Empathy...

 

 Adapted, and paraphrasing to address our little ones with multiple protein intolerances, from: “Where to start, what to say and how to respond when talking with loved ones about Infant Reflux” by Mary Kaufman, LCSW September 2006

It is human nature to want to make people feel better when they are distressed, typically our first response is to tell them that “everything will be okay”. Perhaps you’ve been the person who’s said this to someone and you’ve felt it was appropriate. However, perhaps you’ve also been on the receiving end of this comment and you felt insulted, confused or dismissed.  Why is it that the things we think will help the most often put more distance between us and the person we’re trying to console?
This writing will suggest some alternate ways to show our concern, along with ways to deal with unhelpful comments (when you’re the one who needs empathy).

1. “Well, at least s/he’ll grow out of it”.

 ** If you’ve ever said this to someone, think about it this way: You probably know what it’s like to have a stomach ache/cramps, nausea, gas, diarrhea or heartburn, a stomach bug or food poisoning. It’s distressing and you probably reach for the nearest medication and swear to yourself that you’ll never eat whatever food you think caused it again. Now, imagine that you’re a baby and that the distress lasts day in and day out.  Now, imagine being the parent of that baby—who listens to screaming day and night, who doesn’t have anything to stop the distress, who doesn’t have an article of clothing or a piece of furniture that hasn’t been spattered with vomit, who stays up half the night trying to console a screaming baby, who attends countless appointments with specialists, maintains a rigorous schedule and keeps a detailed log of feeding intake, BMs, etc. As that parent, when you hear “S/he’ll outgrow it”, you’re hearing that this is just some phase that your child will outgrow. You’re NOT hearing empathy for just how hard things are NOW. Sure, we can all look to the future and imagine how different things might be; however, in the present reality, things are pretty tough and it would be nice to have that acknowledged.
**If you’ve ever said this to someone, a better choice might be, “I’ve heard that kids can outgrow this, but it must be miserable when they’re going through this.” Or “Does your doctor have any idea what’s causing this or if there’s any way to make him/her more comfortable?”
**If someone says this to you: An easy comeback is to say, “Yes, and that will be great. However, right now, it’s pretty difficult to deal with.”

2. “But s/he looks healthy to me”. Unfortunately, many people with terrible illnesses also look healthy. We would never question a cancer patient’s diagnosis because s/he “looks so good”. While food intolerances is not the same as cancer, very serious damage can be done to the GI tract if left untreated—no matter how healthy or happy a baby looks.
**If you’ve ever said this to someone: You might consider saying something like, “You must be working very hard to keep him/her so healthy despite all of his/her issues” or “What a beautiful baby—I am so sorry s/he is suffering like this”.
**If someone has said this to you: A good comeback is to say, “S/he really is gorgeous; however, the intolerances are really causing damage to his/her GI tract and ability to eat”.

1. “My baby/toddler was a picky eater, too” or “S/he’ll eat when s/he wants to”.

 Unfortunately, many babies will develop oral/food aversions because it is so painful to eat and digest. The difference between picky eating and food aversions is that picky eaters simply don’t eat foods they don’t like; however, they will happily snack on things they like (Chocolate cake, cookies, milk, etc.). A child with a food aversion will literally half starve him/herself to avoid the pain of eating. Children will go days without taking formula or food and often end up losing weight and/or being admitted to the hospital for dehydration.

 **If you’ve ever said this to someone: You might consider saying something like, “I can’t imagine being in so much pain that I wouldn’t want to eat. This must be so hard to watch.” Or “I never knew a baby would do this—what is your doctor doing to help?” This lets a parent know that, even though you might not fully understand WHY, you are still being empathetic. It also acknowledges that there is a problem and doesn’t make the parent feel as if they have to defend the diagnosis.
**If someone has said this to you: A good response is to say, “S/he is being followed by a _________specialist who has confirmed that this is a very serious issue. It’s different from just being picky—it’s called an aversion and many children with multiple food intolerances develop this”.

1. “…Sounds like a made-up diagnosis” or “Babies didn’t have this in my day”.  Just like other diseases (cancer, etc.), medical science is much more sophisticated at being able to diagnose problems that might have been missed in past generations. When the parent hears this, it can further make them feel alienated or might make them feel as if their baby’s problems are “all in their head”. Parents need reassurance when their child is sick, even if people don’t truly understand what’s going on. When a parent hears this type of statement, it really sounds as if the speaker is telling him/her that they don’t believe the diagnosis exists or is accurate. This can quickly put a person on the defensive.

**If you’ve ever said this to someone, you might consider saying something like, “Wow, it’s amazing that doctors are able to diagnose things like this now” or “I’ve honestly never heard of this before—tell me more about it.”
**If someone has said this to you, a good response might be to say, “It’s a blessing that medical science is now able to pinpoint what’s going on. Otherwise, we wouldn’t know why s/he’s suffering.” Or “It’s always existed; however, doctors didn’t know what was happening and often mislabeled this type of problem as ‘colic’. I’m so glad they’re able to diagnose these things now so that we can help our baby.”
Points to remember: As stated before, it is human nature to want to make those around us feel better when they’re hurting. The problem is that we don’t often quite know how. Here are a few things to remember when talking to these parents:

1. Minimizing the problem won’t help anyone. Instead of trying to make people “look on the bright side” or making statements like “This will all blow over soon”, try simply saying something like, “This must be so hard for you”. Sometimes there’s nothing more comforting to someone in need than hearing that another person empathizes with their suffering. Making light of someone else’s misery just puts them on the defensive and makes them feel more isolated.

2. Don’t be afraid to ask questions, and ask BEFORE doing research for a parent. Most parents welcome questions and don’t mind explaining their child’s diagnosis and treatment plan. Since children can present with different symptoms, suffer from different complications and often receive different treatments, it’s much better to talk to the parent(s) to find out what’s going on than to research on your own and come back with advice/information that might not be helpful.

3. Even if you were a perfect parent, try to refrain from assuming that you can make a child eat/cure his reflux/get him to sleep through the night. It is so frustrating and depressing to have a baby who doesn’t do any of the things that other “normal” babies do. Parents of kids with multiple food intolerances will deal with gallons of puke, tons of laundry, babies who awaken all through the night for months longer than “normal” babies, babies and toddlers who would rather starve than eat, etc. it’s easy for a sleep-deprived parent to start to blame him/herself for the baby’s issues and hearing comments from a friend or loved one that insinuate the child would do much better under their care can be devastating for a parent.  It’s hard not to want to jump in and take over, usually out of an intense desire to help. If you truly want to be helpful; acknowledge what they are going through and then offer your services to the parent(s)—ask if mom wants you to throw in a load of laundry, cook dinner or clean the bathrooms for her. See if mom or dad would like to take a nap while you watch the baby for awhile (just remember to follow their guidelines for eating/sleeping!). These things are so helpful to an overwhelmed parent and your willingness to empathize and pitch in will not go unnoticed!

Feeding our Protein Intolerant Toddlers Perspectives by Amanda

Toddlers are such a wild and crazy bunch. Everything with them seems to be a never ending adventure, and eating is no exception! But what do you do when your little adventurer is food protein intolerant? Many PI toddlers are still in the midst of weekly or biweekly food trials. Some do not even begin the majority of food trials until their first birthdays because of frequent and dramatic reactions to food as infants. So in a way, we parents of these little ones need to start at the beginning, introducing low allergen foods gradually and working on building a tiny menu. Potentially this is done with the help of a dietitian or nutritionist who is informed about PI. All of these precautions aside, however, we must remember-- PI toddlers are still toddlers.

My B started foods at  6 months old. Due to several reactions to a variety of foods, and needing to take a few breaks from solids for her gut to heal, we had only 4 safe foods on her 1st birthday. Six months later, we now have 10 safe foods and we are now doing weekly food trials as opposed to every third week, as we were doing when she was younger than 15 months. She has had some recent fails, but since many of her severe reactions are the "build-up" kind (we see red flags leading up to the reaction as the food trial continues), we have been able to stop the food when the reaction was still considered minor. This helps her to rebound more quickly and to be more accepting of new foods-- therefore, we are able to push on much sooner than before!

It is a constant struggle for us trying to create food that looks and "feels" like toddler food within B's limited menu. Creating alternative recipes has been a lifesaver when it comes to not only combating pickiness, but helping to deal with texture issues and food aversions. As a parent, I want my toddler's eating experience to be a sensory experience, incorporating a variety of textures and flavors into her little diet. Instead of serving the pearsauce again, for instance, trying baked pears with brown sugar or dried pear chips can offer some variation. Instead of creamed or kernel corn, we experiment with corn flour or Masa Harina (a type of corn flour that is much milder in taste and more similar to "regular" flour in texture). By simply adding water and maybe throwing in some oil, salt, and/or sugar, a simple flat bread or pseudo pancake can be created! I am hoping, once we pass some more foods, to spend a little time trialling spices or extracts, just to jazz things up. We will simply follow the same protocol as a food trial! In my opinion, when baking, the keys to remember are creativity, safety (of course!), nutritional value, and keeping it simple. I want to not only create something that B will enjoy eating but also something that I will enjoy making. No one wants to be slaving in a hot kitchen every day, only to turn out one little muffin. Really-- we ARE raising toddlers!

I could talk forever about feeding little ones with food protein intolerance--- keeping a degree of "normal" in B's very abnormal diet is very near and dear to me. I want other little ones dealing with protein intolerance to beincluded in the normalcy, exploration and fun that food can offer for them. Hopefully, some of these tips will help accomplish this goal. Until next time, eat on!

Halloween for Kids with Protein Intolerances...a perspective and insights by Amanda

Here comes Halloween this weekend, and nothing is scarier than the potential for those sweet little treats causing an awful reaction and yet another ER visit, not to mention a very sad and sick little one! But there are, of course, many fun ways to celebrate with your little one, no matter what the age and no matter what the limitations!

I'll start with what we are doing this year.  B is 19 months old and has about 10 safe foods; she reacts to several foods and we are avoiding several others. We are going to four houses in the neighborhood-- our immediate neighbors. I am preparing treat bags in advance and asking each neighbor to give out the specific bag for B, so that everything that goes into her treat bag, she can eat. I am making arrowroot cut-out cookies (possibly with frosting) in Halloween shapes, making little ziploc baggies of freeze dried fruit pieces, and including some non food items, such as stickers and spider rings. I am also throwing in some smarties! Keeping our route limited to people we know will ensure that B gets safe treats (predelivered by mama!) and doesn't get overwhelmed by too many unfamiliar faces. And she will be included in the holiday!

Here are 10 ways to celebrate Halloween with your PI baby/toddler/ child.

1. For an older child with multiple food allergies/intolerances, celebrate with your own party. By making the foods yourself, you have more control over what he/she is exposed to.
2. For those under a year old, see if there are any Halloween parades in your area (simply little ones parading down the street in their costumes-- nothing big). Load him/her up in a wagon, all dressed up in a Halloween costume, and start the parade. He/she will love watching all of the other kids, you can get some cute pictures, and parades like these are quick ways to celebrate and still be home for bed. Or organize your own parade!
3. For your toddler, maybe you are ready to venture to a few houses for trick or treating. You can deliver treat bags ahead of time, as we are doing with B this year, or if your little one has few food triggers, he/she is still young enough that you could easily “weed out” the unsafe candy from his/her bag without your little one really noticing much.
4. If you are only taking your little one to family or close friends' homes, you could ask that they only give out non-food treats-- stickers, plastic rings, pencils, etc
5. If you belong to a support group of other families with PI kiddos, orgnaize an “allergy free” fun night-- you can arrange a “menu” with the other parents. Even if not all of the foods are safe for all of the kids, there will be other parents knowledgeable about food allergies to keep an extra eye out for the kids.
6. Have a family night-- a Halloween movie marathon. You can make this appropriate for any age.
7. If your little one reacts to pumpkins, you can buy craft pumpkins at Michaels and other craft stores. They carve up even better than the real thing!
8. You could have a “food free” party with plenty to do--- painting pumpkins, mask making, games of flashlight tag, movie marathons, and simply dancing to Halloween music (monster mash, anyone?)
9. For a younger child, dress him/her up and have your little one help you give out candy. Make sure to have special Halloween treats for them nearby, even if the only thing you do is to add food coloring to make his/her applesauce orange!
10. Spend an afternoon making safe, homemade goodies with your little ones. Buy or make special Halloween dishes to serve the treats on later that evening while reading spooky (or silly!) Halloween books by flashlight.

Some bagged candies that tend to be safe for MOST kids include smarties and many listed here: http://www.econaturalsolutions.com/site/704463/page/308658
http://www.avoidingmilkprotein.com/candy.htm"http://www.avoidingmilkprotein.com/candy.htm,
http://allergicliving.com/index.php/2010/10/02/food-allergy-allergy-safe-candies-treats/


Of course, always do your own research when in doubt. We want our kids to have fun and to be safe! And finally, here are some links to allergy-friendly recipes for treats. Nomatter how you choose to celebrate, have fun, be safe, and take lots of picture of those little dressed up cuties!
http://www.kidswithfoodallergies.org/resourcespre.php?id=119&title=allergy_free_halloween_recipes
http://babybeesfpiestestkitchen.blogspot.com/
http://www.livingwithout.com/
http://foodallergies.about.com/od/multiallergenfreerecipes/tp/Allergy-Free-Halloween-Recipes.htm

"Are we ready for a second child?" A personal account by Dawnetta

When we decided to have a second baby, my very optimistic family and friends all said, "I wouldn't worry about Lilly's protein Intolerance, I bet your next child won't have those same problems." Having read blogs and developed relationships with other MSPI moms, I knew that having a family full of kids who all had Protein Intolerance was a legitimate concern.

The question was, could I do anything to make a difference? I have readabout Moms taking extra supplements, and eliminating foods from theirdiets for the 1st, last or all 3 trimesters of pregnancy. Some said these things helped, others still had babies with PI. Without enough research, there is no way of knowing if these children would have been MSPI free regardless of this exposure. After what we had been through with our 1st child, I was willing to do all of those things, if I had any reason to believe it would help. When I talked with my OB she suggested I talk with Lilly's Pediatrician, who in turn suggested I talk to a lactation Consultant. I spoke to a very helpful lactation consultant who had friends with MSPI babies, she suggested going off Dairy and Soy during the last 6 weeks of pregnancy! With an MSPI 2 yr old at home, my consumption of Milk and soy is already drastically reduced. I worried about getting enough calcium, if I restricted my diet for the whole pregnancy, so I decided the Lactation Consultant's advice would be my strategy.

This strategy is unlikely to actually affect whether or not this baby has MSPI, but I do feel confident that this baby will have an easier first few months of life than my Lilly had. If my milk is clear of these Proteins, we will be able to see our babies actual temperament and get to know him/her. This clear milk strategy combined with my knowledge from helping Lilly through MSPI is giving me visions of pleasant, sleeping babies, and cuddling a cooing newborn (something I did not experience much the first time). For this baby's sake, I hope to have good news to share in January, when he/she is a couple months old and we try some Milk or Soy to see If all of this was even necessary! When we decided to have a second baby, my very optimistic family and friends all said, "I wouldn't worry about Lilly's protein Intolerance, I bet your next child won't have those same problems." Having read blogs and developed relationships with other MSPI moms, I knew that having a family full of kids who all had Protein Intolerance was a legitimate concern.The question was, could I do anything to make a difference? I have readabout Moms taking extra supplements, and eliminating foods from theirdiets for the 1st, last or all 3 trimesters of pregnancy. Some said these things helped, others still had babies with PI. Without enough research, there is no way of knowing if these children would have been MSPI free regardless of this exposure. After what we had been through with our 1st child, I was willing to do all of those things, if I had any reason to believe it would help. When I talked with my OB she suggested I talk with Lilly's Pediatrician, who in turn suggested I talk to a lactation Consultant. I spoke to a very helpful lactation consultant who had friends with MSPI babies, she suggested going off Dairy and Soy during the last 6 weeks of pregnancy! With an MSPI 2 yr old at home, my consumption of Milk and soy is already drastically reduced. I worried about getting enough calcium, if I restricted my diet for the whole pregnancy, so I decided the Lactation Consultant's advice would be my strategy.This strategy is unlikely to actually affect whether or not this baby has MSPI, but I do feel confident that this baby will have an easier first few months of life than my Lilly had. If my milk is clear of these Proteins, we will be able to see our babies actual temperament and get to know him/her. This clear milk strategy combined with my knowledge from helping Lilly through MSPI is giving me visions of pleasant, sleeping babies, and cuddling a cooing newborn (something I did not experience much the first time). For this baby's sake, I hope to have good news to share in January, when he/she is a couple months old and we try some Milk or Soy to see If all of this was even necessary!

Delilahs story....Personal experiences shared by her mother Jessica

Here is a little back story of what we have been through with Delilah and her GERD/Food Protein Intolerance….

Delilah came into this world at a tiny 5lbs 15oz on January 25, 2009. She came on my birthday after a horrible 21 ½ hr labor and an 8 week bedrest due to severe preeclamsia.. From the start she wasn’t a good eater. She wouldn’t latch to breastfeed and wouldn’t take a bottle. We took her home after 2 days and she got down to 5lbs 2oz. We struggled at home to get her to eat (while breastfeeding and using an SNS pump with Enfamil) and gain weight so at her 2 wk checkup I was told that she was using too much energy to breastfeed and I needed to STOP breastfeeding and pump and bottle feed. I did this but she still wouldn’t eat. Every time we offered the bottle she would arch her back, squirm, cry, pull her legs up to her tummy and wiggle all around. She associated the bottle with pain as we figured out later on after discovering reflux was part of her problem. At 4wks she started to refuse my breast milk altogether so we put her on strictly on Enfamil which made her symptoms worse not to mention made her extremely constipated so we switched to Good Start. At her 2mo check she was still less than 8lbs and I really felt she had an intolerance to milk and possibly soy and wanted to put her on Nutramigen but her doctor kept telling me that MPSI and reflux wasn’t the problem. I have heard “Its just colic” more times then I would like to recount.
At 3mo old she was laying in our bed one day and stopped breathing completely and turned blue and was lifeless…I picked her right up and stimulated her and she started breathing on her own. Scott took her in to change her and this same thing happened 10min later so off to Primary Children’s Hospital we went. This happened another 2 times during the 3 hr wait to get into a room. After a head CT, urine cath, bloodwork, RSV test and numerous others they told us she “just” had reflux. Looking back I cannot fathom that they used the word JUST….

We took her into her doctor the following day and they ran more tests and got us set up with an apnea monitor and everything still came back fine so she was put on Axid for reflux. Before this day she never spit up once! The Axid was horrible on her and made her spit up constantly so a week later they switched her to Previcid solutabs. This stopped the constant spitting up but she continued to arch, squirm and fight eating. She would eventually eat a little here or there but it wasn’t enjoyable for either of us. After joining an online support group called Reflux Rebels on www.babycenter.com I got more tips and advice on what to do. I started to give her Mylanta Cherry Supreme before feedings which helped a ton and changed from thickening her bottles with rice cereal to Simply Thick which was also a great change for her. After a while on the solutabs her stomach would still cramp, she would still have reflux symptoms which included a runny nose, mucus filled horribly stinky diapers, stomach cramps and extreme fussing,  so I went against her doctors wishes and put her on Nutramigen. She did a bit better but not much so after doing the pH probe in which she had >144 reflux events in a 24hr period we switched to Neocate (an amino acid based formula with no milk or soy) and finally saw a GI who put her on Zegerid (an omeprozole and sodium bicarbonate powder that’s immediate release). The Zegerid and Neocate combo seemed like a godsend. For the first time in Delilah’s 7months of life I actually enjoyed being around her. She wasn’t always in pain but we were still dealing with the apnea.

It was around this same time that we started to introduce solids to Delilah. This has been one of the hardest things we have ever been through. We started with what the doctors felt we should… Gerber brand squash and sweet potatoes. Immediately she reacted with having severe stomach cramping followed by very foul smelling stools. This lasted days. We decided to then try bananas because who’s allergic to bananas, right? Well Delilah is! She was fine at first but after about a week we noticed the eczema on her legs were getting worse and spreading and she was having more and more stomach issues and bowel problems. We stopped the bananas and she was again fine. We did this same trial and FAIL with peas, green beans, potatoes, every kind of squash, eggs, soy, milk protein and/or lactose (even in the medical form in medications). We also noticed with each hospital visit every time adhesive was applied or she was touched with latex gloves she would get a welt or rash that would last days. Tegaderm was the worst, well besides latex. I remember when we got her ears pierced we had no idea of the latex allergy and the gal piercing her touched one finger of her latex gloved hand on her cheek and it immediately broke out into what looked like millia (or baby acne) but lasted for 8 days. Our doctors also felt as though this was not a true latex or adhesive allergy and dismissed us yet again. I however let everyone that came into contact with her from that point forward that she had a severe reaction to latex and adhesives. When she is immunized now we cannot even use Band-Aid’s because the after effects are much worse on her than a little blood on her pants.

It was at this time that we decided to change pediatricians. I felt as though I had been told “x” wasn’t the problem when it really was so many times I had no faith left in her.  Our new pediatrician was and is amazing and listened to me from day 1!
In October 2009 we did a sleep study in which it determined she would stop breathing 7.7 times per hour while sleeping so she had her tonsils and adenoids removed on 1/5/10 and she has done much better since. When we went in for this surgery I came prepared! I brought pictures of every reaction Delilah had had with latex, adhesives, foods (stool pictures as well as rash pictures) and I couldn’t have been more pleased with myself. For the first time I was standing up for Delilah’s health and NOT letting the doctors tell me how something was to be done or would be done. I was the one calling the shots. After the surgeon saw the pictures I brought they decided to suture her air tube to her lip and her IV to her arm instead of using any type of adhesive at all. After surgery we could just focus on her healing instead of trying to treat all the rashes and reactions. I felt so empowered. I was from that day forward even more dedicated to helping my daughter live her life to the fullest and not let anyone or anything get in our way. Delilah is now 19 months and only has about 15 foods she can eat, we deal with reflux and protein intolerant issues on a daily basis and she is the best medicine taker I’ve ever seen.  We did a follow up sleep study in April and she is now down to 1.6 times per hour. It’s amazing to me how happy I was when they told me she stopped breathing “just” one time per hour instead of seven. We have come a long way and almost lost our little girl numerous times to complications from reflux and apnea but apparently god saw fit that we keep our little one that we worked so hard to get here. We, as many reflux/protein intolerant parents, have a long way to go in all of this. This is where me becoming part of a nonprofit group comes in and I found the PIC foundation!

 Parents of MPSI children and reflux all have had issues with finding the right medications, finding the right foods; finding doctors to listen to us, having people tell us its "just colic" and they will "grow out of it. Doctors should listen to us.....not push us away and tell us that we just need to feed our children more of a variety of foods, and stop chasing the “dream” that this is all related to a possible medical cause like Food Protein Intolerance or GERD. Unfortunately for us our relationship with the medical community is not a great one and I feel that I have learned so much these past 19 months that I want to make sure not another parent feels this way. For us to not get an actual diagnosis until 14 months is honestly ridiculous. If there were more educated physicians both general pediatrics and specialty I believe we could catch these heart wrenching diseases much earlier on and give our children a better quality of life from a much earlier age. It makes me sick inside to know that my child suffered daily for 14 months because I could not get a doctor to take me seriously. I truly believe that part of the issue was I was extremely informed and knowledgeable about pediatrics and I was told on more than one occasion that I was making a “mountain out of a molehill”, “I knew too much for my own good”, and “I was just looking for something to be wrong with my child”.  I took extreme offense to these statements made by our physicians for my daughter that I was to trust with her life. I believe in no way should any parent be disregarded because of their background in medicine or anything else. If I had no medical knowledge I truly believe I would have been taken much more seriously. I have been a medical assistant for 10 years in pediatrics so when I had my baby I was sure it would be a cake walk and if anything god forbid would be wrong we would have the best physicians on my side helping me through it! This is why I am so passionate about other parents not going through the extremely long and rough journey I have.

This was Delilah before we got her on Neocate..always crying :(

A thriving 9 month old Delilah after Neocate and on no solids