No Surprise

Sometimes you hear the right song at the right time, and something just clicks and falls into place. I’ve always linked events in my life to songs. There is a power in hearing someone sing words that reflect your emotions and your experiences. I now have an FPIES song. I sing it to Carter and we dance around the house together. I feel like I’m singing directly to FPIES and it helps release some of the hold it has on my life. The song is “No Surprise” by Daughtry. The parts in ( ) are my thoughts and how I relate this to our current situation.     

I've practiced this for hours, gone round and round
And now I think that I've got it all down (countless hours of FPIES research) And as I say it louder I love how it sounds
Cause I'm not taking the easy way out (not listening to the first Dr who said he was fine)
Not wrapping this in ribbons (FPIES isn’t pretty, and I’m going pretend it is)
Shouldn't have to give a reason why...
It's NO SURPRISE I won't be here tomorrow (Someday this will be gone)
I can't believe that I stayed till today (Not going to let it hold me or Carter down anymore)
Yeah you and I will be a tough act to follow (We do make a darn good FPIES team)
But I know in time we'll find this was NO SURPRISE
It came out like a river once I let it out
When I thought that I wouldn't know how (Didn’t think I would be able to handle FPIES)
Held onto it forever just pushing it down
Felt so good to let go of it now (Blogging)
Not wrapping this in ribbons
Shouldn't have to give a reason why
It's NO SURPRISE I won't be here tomorrow
I can't believe that I stayed till today
There's nothing here in this heart left to borrow (Not giving away anymore of myself)
There's nothing here in this soul left to save (Carter and I have saved each other)
Don't be surprised when we hate this tomorrow (Who doesn’t hate what this has done?)
God know we tried to find an easier way
Yeah you and I will be a tough act to follow
But I know in time we'll find this was NO SURPRISE
Our favorite place we used to go (All the dinners out that rarely happen anymore)
The warm embrace that no one knows (those countless late night snuggles)
The loving look that's left your eyes (the glazed empty look his eyes get during a reaction)
That's why this comes as no, as NO SURPRISE (that we have fought this hard)
If I could see the future and how this plays out
I bet it's better than where we are now
But after going through this, it's easier to see the reason why (I know it will get better, and after all we have done, it has to)
It's NO SURPRISE I won't be here tomorrow
I can't believe that I stayed till today
Yeah you and I will be a tough act to follow
But I know in time we'll find this was NO SURPRISE
The kiss goodnight, it comes with me (FPIES won’t take this)
Both wrong and right, our memories (The guilt of missed triggers and reactions)
The whispering before we sleep, just one more thing that you can't keep (FPIES won’t take away those moments)
Our favorite place we used to go
The warm embrace that no one knows
The loving look that's left your eyes
But I know in time we'll find this was NO SURPRISE
I just thought I’d share. I’m sure we all have sons that lift us up and make us cry at the same time and this is one of those for me. Carter will probably grow up singing it!

Broken

So much has happened lately, but with the holidays coming, I told myself I needed to take an FPIES break. I have since learned that it is impossible to take an FPIES break.

Eggs and chicken have been taken out of Carter’s diet and he is doing much better. His chronic runny nose and cough are gone.  He is sleeping through the night again and is all around, a much happier boy.  He has confirmed for us that he was reacting to the soy fed to the chickens. I will begin my quest for grass fed chicken and eggs in the New Year.  This also makes me wonder about all other meats. I will have to find trusted ranchers or wild game, but once again, that will all be addressed in the New Year. And then there’s cow’s milk . . . Is Carter reacting to the cow’s milk proteins or the soy fed to the cows? But that will all be saved for another blog, after some more research.

We will also be traveling to Sacramento to have allergy patch testing done on Carter. We will be there for a week while the test is conducted and the results are interrupted. Patch testing involves taking the food and applying it directly to the skin for 48 hours. The patches are removed and the reaction to the skin is noted. The area is then read again, 48 hours later and a final result is given. They will be placing approximately 15 patches across Carter’s back. We are grateful to some wonderful family and friends who are opening their homes to Carter and me so that we do not have to travel back and forth. I am hopeful that the patch testing will provide a guide as we introduce new foods.

I was reading something the other day written by another FPIES mom, who described herself as Broken. In truth, FPIES has broken us all, over and over again. Every time a reaction happens, every time another product is found to be unsafe, I feel like I’ve been broken again. There are no easy answers. Discovering that almost all soaps were unsafe for Carter, was saddening, but bearable. Discovering that many of the toddler friendly Crayola products contain soy and are therefore unsafe for Carter was devastating. Both the Crayola washable markers and many of the Color Wonder products contain soy. It is in these moments where I feel that I will never be able to create a Carter safe environment, even in my own home.  It is my responsibility to provide the most normal life possible for Carter, to make sure he has as many normal toddler moments as possible. In an effort to do this I made Carter some home made play dough. We got out some cookie cutters and were so excited to see him experiencing a normal toddler moment. Unfortunately, he wasn’t as excited about it. He looked at and watched us play with it, but didn’t play himself. I’m just not sure he knew what to do with it. We’ll have to try again, this time getting his brothers involved. Hopefully watching them play with it will encourage him to play too.

I worry about his language development too. He seems to be behind in his speech. There are maybe only 3 to 5 words that are understandable, the rest of his speech is just inflection, sometimes using the first syllable of a word, but never the whole word. It is an issue I plan to address with his pediatrician at his next appointment.

So I wonder how any parent of a chronically ill child, especially moms who end up providing most of the primary care, could not feel broken. But it is in those moments where we have fallen to our knees that we find the strength to build ourselves back up, maybe just a little stronger than before. It is this extra strength that propels us through the next fight, to that next moment where we have given all that we are, where we once again are broken. And it all begins again.

Formula Flavors

Carter is on Vital Jr. a semi-elemental formula much like Alimentum, but formulated for toddlers. He drinks the vanilla flavor with no problems, loves it actually. The last order of formula we bought was a mix of unflavored and vanilla. I have tried the unflavored in the past, but after getting a taste for the vanilla, there’s no way he’d drink it plain. So I got some of the Flavor Straws, thanks to some wonderful mommies on here, and we tried the strawberry.  I got him a special cup and made a HUGE deal about using a new cup with a straw to drink his special milk. He was so excited!! He clapped and smiled and even laughed! I gave him the cup and he took a couple sips . . . but he made a sour face. So I kept encouraging him and I think he drank an ounce total. He then gave up on drinking and just wanted to play with the cup. He got upset when I took it away, but really didn’t drink anymore. So I thought it was time to get creative!

I cut open the straw and dumped the flavor beads directly into the formula. I shook it and gave it back to Carter in a sippy cup. He took a big drink, and then spit it all back out, making the most sour face!! I looked and the beads hadn’t dissolved at all. Instead, they all sank and stuck to the bottom of the cup.

The next two diapers he had were very acidic smelling and burned his bottom. Was it the straws? He only had one and didn’t even have much milk through them, so I’m thinking it was something else. But that’s just another part of the guessing game.

I have two other straw flavors; banana and cookies and cream. I don’t mind experimenting with the flavor straws or even other flavoring methods for the formula, but I am worried that he will go on a formula strike again. The last time we tried to give him an unflavored formula, Peptamin Jr, Carter refused to drink it and went 72 hours without taking any formula. The idea that a child will eat when they are hungry enough doesn’t apply to Carter. Although I do wonder if he refused to drink it after taking in the first ounce, because there was something in that formula that didn’t agree with his system. Yet another guess in our guessing game.

 And then there’s the issue of the cases of unflavored formula I have already. I need to find a way to get him to drink them. I need to start now since our supply is almost at 50 % vanilla and 50% unflavored. I have tried mixing the two formulas together. I did a 50/50 mix, but he wouldn’t drink it. I did a 20/80mix, but he still wouldn’t drink it.

I have searched the internet and asked so many people about the various ways to flavor formula. I know some people use Crystal Light, but that just sounds scary. I have heard of other people who use vanilla extract with great success.  I know, you’re thinking, “Wow, vanilla extract, that would be easy!” Did I mention that it’s $24 for 8 ounces? So we made a family trip to Whole Foods today to buy some of this special vanilla. We bought a 2 ounce bottle for $7. One capful or teaspoon per 8 ounce serving, that’s what we are going to try first. I am hoping it will be just what we need to get Carter to drink his unflavored formula. We will try tomorrow and hopefully having Daddy here will make Carter more willing to try yet another of Mommy’s concoctions.

Carter may be on this formula for years, so I want it to be something that tastes good to him. His formula also comes in Strawberry and Chocolate, but these flavors are harder to find, at least at a reasonable price. And we are still at the beginning of our battle with gettingthe insurance company to cover it.

There will always be something. Some obstacle to overcome, some new challenge to face. It is all part of the FPIES maze.

Empathy

This was posted by a friend of mine on her blog. The article was originally written regarding infants with reflux, but she adapted it to apply to food allergies and intolerances. Thank you Joy!

 “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”.

3. “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”.

4. “…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!

Threshold

Threshold.  I have been mulling this over for some time now. Many FPIES kids seem to have a limit to how much of a given trigger they can have before a reaction takes place. Carter is this way with soy. He had a chronic cold for months last year. He had a constant runny nose and an awful mucousy cough that seemed to be nonstop. At first I thought it was allergies. I even called the pediatrician to ask about giving him allergy medicine. He wasn’t even a year old yet. I was told that it was very unlikely that he had developed a seasonal allergy since this was his first exposure to the allergens. His breathing got worse. He was diagnosed with croup twice. Nothing we did helped. He was getting worse. I seemed to be spending more and more nights rocking him and holding him upright, asleep on my chest, just so he could breathe.  Then one night when Carter was 8 months old, things got even worse.  Carter was crying, moaning and whimpering in his bed. I went in, picked him up and sat down in the rocking chair to soothe his discomfort. I noticed that his breathing wasn’t normal. I turned the light on and looked at my little boy. His eyes were half open and he was struggling to breathe. It seemed to take all his energy just to take one little breath. I watched his little chest rise and fall and then counted the seconds before he started breathing again. I looked for obvious signs of lack of oxygen. His lips weren’t blue or purple, but he just wasn’t breathing right. The last time I saw him like this, he was only hours old. He struggled to breathe when he was born and was put under and oxygen hood until his breathing was regulated. I was just as scared then as I was now. I would call 911, I told myself, if his condition got any worse. I held him the rest of the night, just willing him to breathe.

We took him to the doctor the next morning and he diagnosed him with RSV and prescribed inhalers and antibiotics. Looking back on it now, through FPIES eyes, I believe he was having an FPIES reaction. Although he never vomited, he was lethargic and unresponsive. It was like he skipped the vomiting and went straight to shock. His breathing and overall condition was much better by the next morning. 

During this chronic cold, Carter had recently stated eating finger foods; crackers, puffs and teething biscuits. These all contained some amount of soy, usually soy oil or lecithin. Once I removed all foods containing soy, ALL of his cold issues went away.

That was 7 months ago. But the chronic cold has returned. We have had over 2 months of runny nose, cough, face rubbing and spikes o f irritability. At first I blamed it on teething. Then on a cold his brothers had, which was the first one Carter ever caught. But now I have no “normal” things to blame it on. Everyone else is healthy. Carter is the only one suffering from this “cold”. The last time we had these symptoms, it was from food. Could that be the cause this time? Where was he getting soy exposure? We haven’t had anything new. And then it hit me . . . Chicken and Eggs. Chickens are fed a high soy based diet. Could the trace amounts left in the poultry be the cause of all this? I believe so. I have pulled both foods from his diet. And now we wait and hope for the symptoms to clear. If they do, I will seek out grass fed poultry and trial them and Carter will play guinea pig once again.

So what does all this have to do with Threshold? Carter’s formulas have always had small amounts of soy oil in them. I do not think his body can handle even a trace amount more than what his formula contains. In fact, I don’t think he will ever be truly at “baseline” until he no longer needs the formula. So any exposure to soy, even in trace amounts, starts a build up reaction. It puts his body at war with the soy. If this build up lasts long enough, it will push his body too far, causing it to shut down like we saw last February.  I keep going back to the few months we had after our FPIES diagnosis when Carter was only on 2 foods and was thriving. He was the happiest I have ever seen him in his 18 months. I am sure it was the first time in his life that he wasn’t in constant pain.

Now I go back to the pantry and the cookbooks. I remove all the foods and recipes containing eggs and chicken. I find other uses for the ground chicken in the freezer. I look for ways to use one of his safe foods as an egg substitute so he can still have waffles with his brothers. I hope this is the answer. I hope that I can reintroduce safe eggs and chicken into his diet. And then I wonder, is it worth it?

No Tears This Time, Only Poop.

Poop . . . Not long after you get the amazing news that you will be expecting a new bundle of joy, Poop enters your world in a whole new way. First it’s meconium, that first sticky poop that your baby must have before they let you leave the hospital. Then you’re told to track the amount, times, consistency of those first poops at home to make sure the baby is eating enough. My husband and I often joke that no one told us, as parents, we would celebrate Poop so much!! As our two older boys grew, Poop took its proper place in the toilet and left the forefront of our lives. Then Carter was born. Instead of Poop taking a backseat in our lives, it has become the star of the show. Poop was controlling our lives. My day could be made or broken by Carter’s diapers, consistency, frequency, size.  Without really noticing, I let Poop have power. There were diapers that would have both Carter and me in tears. My older boys knew the drill for explosive diapers and were part of the Poop Patrol. We reached a point, where at 14 months old, when we should have been changing 4 diapers a day, we were changing between 10 and 14. It was crazy! We were using more diapers than we did when Carter was a newborn.

In an effort to rid Poop of it’s power, I began a quest for the Perfect Poop. The poop that wouldn’t burn his skin within seconds. The poop that wouldn’t be full of mucous or chunks of undigested food. The poop that wouldn’t leave it’s tell-tale smell in Carter’s room even hours after leaving his windows wide open. The poop that only comes once a day. The poop that wouldn’t explode out of all sides of his diaper and coat his crib. I didn’t think it would be too hard to find the Perfect Poop. I removed offending foods, cut out apples, bulked up on bananas. I did all the things the baby books and doctors tell you to do to help with poop problems, but to no avail. Poop was still winning. I began to realize that Carter’s GI tract was different. It was not a normal system with normal reactions. Carter’s Perfect Poop would never resemble that description in the baby book.  His Perfect Poop goes by it’s own rules. If it doesn’t burn his skin off within seconds of exposure, we are in a good place. If the diaper manages to hold it all in, then we are doing something right. If the mucous is not accompanied by blood, we have succeeded. Carter’s Poop may still scare an unexpecting onlooker, but it’s good for him. Poop no longer has power in our house. Poop can no longer ruin my day. It may cover our clothes, skin and floor.  It may burn our noses with the smell. But it washes off. A little soap and water and it’s gone. And someday Poop will no longer be a nemesis to contend with in our home. It will take it’s rightful place in the bathroom and Pamper’s and Desitin will miss their loyal customers. On that day, we will throw a Bon Voyage Party to Poop . . . And You Are All Invited!!!

The Worst Poop Culprit of them All!
And Carter's Halloween Costume.
Take that Soy!

How Do You Do It?

“I don’t know how you do it. How do you manage to deal with Carter’s condition day after day?”

I have heard these words many times from many people in regards to Carter’s FPIES. They wonder how I do what I do every day. They try to put themselves in my shoes and imagine themselves living a day in my life. But it is not my shoes they need to step into. It is not my life they need to marvel at, it is Carter’s.  How does Carter do it every day? How does Carter deal with his condition day after day? Those are the real questions.

I am a grown woman who is capable of understanding, rationalizing and adapting to the situation. But FPIES has not happened to me. It has not made me different from my parents or my family. It has not changed my initial experiences with life or altered my formative years.  But this has happened to Carter. I wonder every day how much of this he’ll remember. I watch him look at his brothers and I know he knows he’s different from them. Carter knows his food is in a different part of the kitchen. He knows the milk in his cup is not the same as the milk in his brother’s cup. He knows that mommy makes him a different dinner than the rest of the family. For as long as FPIES is a part of his life, Carter will be different. Both of his brothers went to preschool when they were 3. Carter may be skipping preschool altogether to avoid triggering another reaction. For his entire life, he’s watched his brothers go off to school. I wonder when he will start to ask to go too. 

Carter will be 18 months old tomorrow and he is entering a whole new world of experiences in toddlerhood.  This is not the world of infancy that Carter has sailed through with high spirits and happy smiles. The differences will become more pronounced, the limitations become bigger obstacles. Again, I wonder how he will handle it all. He was born with amazing inner strength and a smile that instantly puts a room at ease. Carter keeps everyone in his little world smiling, even in the darkest of times. It is because of his smile that I am able to do it. But how long will that smile remain? Will the realities of FPIES wear down his strength and blur that beautiful smile?

We used to be able to say that this way of life was all that Carter knew. He wouldn’t miss something that he never had. But we can no longer say that. He knows there is a different way of life, and he knows that living that way could cause him severe pain. He is an amazingly smart little boy who embraces the positive aspects in every moment of his life. He smiles at the world and welcomes every day with eagerness and excitement.  It is not about how I deal with my son’s chronic illness.  It is really about how Carter does it, everyday, day after day, with no malice or animosity. So, Carter, how do you do it?

Lessons

Things FPIES Has Taught Me . . .

·         Two year olds have more compassion than the average 30 year old.

·         Walking around wearing a shirt with vomit stains really isn’t that embarrassing

·         It is possible to go a whole day with poop on your shirt and not know it and not care

·         Doctors are human too, which means they are fallible

·         Doctors don’t keep up with the latest research in their field of expertise

·         Crumbs are scary

·         “A taste of this won’t hurt” is completely untrue

·         The internet is amazing. You really can find anything!

·         Mommy instinct should always be acknowledged

·         Poop really is a four letter word

·         The American culture is completely intertwined with food

·         Support is essential to sanity

·         Passing a food feels like a kid on Christmas morning

·         Failing a food is heartbreaking

·         Just reading food labels will not keep our kids safe

·         Seeing your child’s face covered in food can bring tears of joy to your eyes

·         A birthday cake doesn’t have to be made out of flour or even food

·         Every sunrise is a chance to start over, full of possibility

·         Strength is tangible

·         Sleep is optional

·         It’s amazing how creative you can be with foods

·         No matter how many children you have, you are never prepared for this!

I’m sure are more, but this is a start! Any others that you want to add? Add them as a comment!

The Love of a Boy

Today was a big day.  It started out great! Carter woke up without being covered in poop for the first time in over a week. No 8 am bath. No stripping the bed and airing out the room. He’s been so happy today too. Running around and pestering his brothers.  It was so nice to see the happy Carter this morning.

 I also sent out a message to our allergist for some insight on Carter’s most recent food fails. He has successfully passed both banana and cantaloupe in the past. He hasn’t had banana in over a month because I was worried that he was getting too attached to them and wasn't interested in eating anything else. So a couple weeks ago I gave him some banana again. He was such a happy little guy. He was walking around the backyard with his banana, all smiles. Unfortunately the happiness didn’t last. That night he screamed for an hour and a half, completely inconsolable. He had a rough night of sleep and a horrible diaper blow out in the morning.

It’s the exact some story with the cantaloupe, so I was hoping the allergist could help, or at the very least ease my concerns.  I sent the message first thing this morning and got a prompt response back. But it wasn’t anything other than helpful. She didn’t tell me anything I didn’t already know. There weren’t any suggestions or thoughts as to why this happened. Instead she suggested not giving him the food anymore or giving small amounts. Really?!? Hadn’t thought of that one. She also mentioned that fruits can cause generalized tummy upset.  Ok, well when his diet is mostly fruit, what am I supposed to do about that? Her e-mail emphasized in capital letters that this is not an ALLERGY. Every time she used the word it was capitalized. I am not a child, but the e-mail made me feel like one.

FPIES is so much about the search for continuing support from the medical community. It’s a constant desire for a doctor to help you find the answers and help determine the next steps. It is not about dismissing a child because he is gaining weight or because his chronic illness does not pose an immediate threat to his life. Instead he faces the threat of a build up reaction, the inability to absorb adequate nutrition, blood loss through the GI tract. So maybe if he gets so sick that he can no longer gain weight or eat, then the doctors will take him seriously.

It was just more than I could take. I was deflated and defeated. The emotions overcame me and I just sat on the floor and cried.  In the mist of my tears, I felt a little hand on my leg. Carter was kneeling down beside me. He lifted his little hands to my face, and pulled my hand away. “Mommy?” He saw my tears and touched them with his little finger. Then he climbed up into my lap and wrapped his arms around my neck.  The sweetness of that huge hug from those tiny arms. And once again I am blown away by the compassion and unconditional love from a 17 month old boy.  He gives me the strength and courage to keep going.He manages to smile through all the pain. He reminds me everyday to celebrate the little victories. He shines the light through this darkness.

This is why I do it. This is why I look for answers and demand help. No one should be in pain from eating. No one should be dismissed because their condition is not fully understood by the medical community. One day I know there will be tears of happiness as I watch my boy eat a double cheeseburger.  Until that day, we venture onward.

Come out come out wherever you are!!!

The more I research, the more soy I find. I find it in things that should never contain it in the first place.  It’s in our soaps, our baby foods and even in the wax that is put on our fruits and vegetables can contain soy. I have worked so hard to rid Carter’s diet of all offending foods.  I have taken away all the foods that I know to be bad. I have spent countless hours reading food labels and coming up with new menu ideas.  I have bought all the right soaps and lotions.  Yet, it doesn’t seem to matter.

We are still dealing with random and unexplained diarrhea diapers.  They only happen once or twice a day, but they burn his skin and cause him pain. As soon as I pick him up and tell him it’s time to change, he starts to squirm. It is not a playful or even a stubborn squirm.  It is the all too familiar, “Mom, this is gonna hurt” squirm. He cries and pulls at his legs while I wipe him. Once he is clean and gets his new diaper on, he’s back to his happy self.  I wonder if this is our “normal”. Is this how he will live his life? Is there really nothing more I can do?

Carter had some cantaloupe not too long ago. I thought this was a safe food for him. I was wrong. Within a couple hours, he was screaming in pain. It lasted for an hour before he finally went to sleep. The next morning his diaper was full of cantaloupe with small streaks of blood. 

Blood. It is never supposed to be in your child’s diaper. The first time it happened, Carter was two weeks old. It was several small streaks.  At it’s worst, Carter was about 9 months old. I opened his diaper and it was full of bright red blood. Raw, hot fear filled my body. I have never felt anything so strong. I cleaned him up and looked for the source, sure it was just a case of bloody diaper rash. There was nothing on his skin. The blood had come from the inside. I spent the rest of the day staring at my baby, waiting for the problem to worsen. We were lucky. It never did. But it ignited the fear deep in my soul, a fear that clawed it’s way through when I changed that cantelope diaper.

I am not sure whether it was the cantaloupe or a crumb off the floor.  I have noticed that whenever I reintroduce a food into Carter’s diet, even a food I thought to be safe, he has some sort of reaction. It is not a severe reaction, but a lesser one involving bad diapers and screaming pain.  It seems as though his system is rejecting all foods other than those he has on a regular basis.  Is this initial reaction normal for an FPIES child? Should I push through and see if the reaction worsens? I cannot, in good conscience, do that. If his body is rejecting the food in a small way, why would I push to see if it’s just an introductory phase, risking a full blown reaction?

I do not like the helplessness that has overwhelmed me. These are the moments where I feel that I will never help my little boy to be completely pain free. I will never know exactly what causes his pain or how to help him manage it. These are the moments where I think that I’ll be sending him to college with a list of safe foods he can eat. I know that in these moments, the best thing to do is allow myself to feel these feelings and grieve through this because at the end of it I will find the strength to keep moving through this maze and find a way out.

Plagio . . What? Flashback #1

I said I would do an occasional flashback post to show just hw far Carter has come. Here is Flashback #1.

Plagiocephaly, more commonly known as a flat spot. It’s pronounced: plā-jē-ō-ˈsef-ə-lē. This was Carter’s first encounter with a specialist, but certainly not his last. At his 4 month and 6 month check up, our pediatrician mentioned that he had a flat spot. We were familiar with that, as our oldest had a flat spot too. We fixed it with a little repositioning during sleeping and bottle feeding. The pediatrician suggested that we keep an eye on it and se if we could fix it like we did before. I wasn’t worried about it at all. He’ll grow and his head will change.  We’ve got this under control.

During the time between our 6 and 9 month check ups, 2 things happened; my husband began to notice that Carter’s head shape was getting worse, and I noticed that Carter was always looking to the left. I mean all the time. I did a little research and found torticollis, a condition that occurs with the muscles in the neck. They tighten on one side and cause the head to lean in only one direction. When the neck tries to move in the opposite direction, it can’t because the muscles have started to shrink and cannot stretch out fully. There are various physical therapy exercises you can do to help loosen those muscles and regain full movement.

I went to Carter’s 9 month check up prepared to ask about his head shape and the lack of neck movement. I didn’t even get the chance to voice my concerns. The doctor took one look at his head, felt it and said that the shape of his head was pretty bad. That’s the first time I heard the word Plagiocephaly. I found out that in many cases Torticollis and Plagiocephaly go hand in hand. At the time, I didn’t understand why Carter refused to turn his head. He always stayed in one position whether he was sleeping, eating, in the car, on the floor, anywhere. No matter how I moved him, he always repositioned himself.  Our options were simple: Do nothing and hope that he grows into it, Or see a plastic surgeon who specializes in Plagiocephaly. The specialist is a 4 hour drive from home and Carter would have to wear a “helmet” 23 hours a day for approximately 6 months. My husband and I talked it over, and there really was no choice. We were off to the specialist. We were booked an appointment only 2 weeks later. That was one of the longest two weeks of our lives, up to that point anyway. I wasn’t sure what to expect or how much of the cost our insurance would cover. I had no idea how Carter would adjust to wearing something 23 hours a day either. Summer was quickly approaching and with temperatures reaching over 100 degrees, it sounded more like torture than treatment.

We met with the specialist who said that Carter would benefit greatly from a helmet. This was based on measurements that were taken. The differential of these measurements should be around 6 millimeters, Carter’s was 15.2. We were sent to an office that specializes in these helmets. Carter got a Starband helmet, which is the brand name of the helmet. A scan was taken of his head and that scan was made into a form. The form was used to make his customized helmet. We even got to choose the design that was imprinted on the helmet. We chose a back and white spotted pattern that looked a lot like cow print. It was really cute!! This whole process took almost a month to complete. And then came the big day!!!

We drove the four hours, nervous all the way. The technician, Amy, put the helmet on and we all held our breath. He didn’t even seem to notice!! And he looked pretty cute too! We were told to gradually move up to wearing the helmet all the time. It took 4 days to get to that point, and Carter was AMAZING!!!!! He didn’t have problems sleeping or crawling or maneuvering at all. It was really like h didn’t even know he had it on . . . until we had to take it off. For an hour a day, the helmet was removed so we could wash it and wash him. He would wander around the house looking for it. He was always out of sorts when it was off too. It was like it became a part of him. If he found the helmet, he would drag it around with him and try to put it back on!! He got so used to it being there that he would more readily bump into things because it didn’t hurt.  Once again, this was a problem when it was off. He would keep crawling towards something waiting for the helmet to make contact, except now it was his head that collided into table legs and walls.

Every month we made the journey back to see the technician, take measurements and have any adjustments made. We were told Carter would wear the helmet for 6 months. We were also told to expect a millimeter adjustment every month. The goal was to get his number cut in half. He was a 15, so ideal would be 7.5.  He was down to a 12!! We were so excited!! Long story short, it only took Carter 2 and a half months to get to an 8 millimeter differential. It was on June 29, just a month after his first birthday that Carter graduated from his helmet. We have saved it, along with the form they made of his head. A tribute and keepsake to an amazing little boy! He never complained. He never cried. He took it all in stride. I know it was much harder for us than it was for him. We worried about him being different, but I think it was paving to road to the differences he faces now. It was during this 2 and a half month period that Carter had his first FPIES reaction. The timing couldn’t have been better. Carter had the most beautiful baby doll head, and now we were able to focus all our energy on helping him eat.

I often wondered what led to the Plagiocephaly.  I have slowly been putting the pieces together. Carter was in constant pain as an infant. It was a pain I didn’t understand. It was a pain I could not fix. It was hidden behind the reflux and that happy little smile. Carter kept his body in a curled up fetal position. It was like he was hiding from the pain, trying to crawl away from himself. It is this position that he stayed in and it was the cause of his flat head and the need for the helmet. FPIES has been with us since the beginning, and this was just one more distraction, one more wrong turn, throwing us off in this crazy maze.

Here are his before and after scans. You can see the flat spot on the right back side of his head, In the after scan, it's almost perfectly round!!

Support

After a full weekend away from my boys, I’ve come back home with clearer, more focused eyes and a new perspective on the word “support”.  I thought I understood this word and it’s meaning in my life, but FPIES has brought it to a whole new level. Support for me has taken a total transformation in the last year.  Support is someone telling me that they’ve done some reading and research into FPIES so that they have a better understanding of it.  Support is having someone brainstorm different ways to treat Carter’s cold that don’t involve ingesting medications. Support is the acknowledgement from family and friends that what we are dealing with is real. Support is the understanding that we don’t attach the term “chronic illness” for attention. Someone is someone understanding that there are times where I just want to have a non-FPIES conversation. 

We have been in this maze long enough for our family and friends to see that this is not something we will be free of anytime soon.  They are starting to realize just what the walls of this maze are made of and how impossible it is to break through. They have seen how dark it is in here and how easy it is to get lost. They have seen some of our strongest moments and some of our weakest. And they have shown us the true meaning of support.

I have finally started to share my truths. I used to just mask over our daily struggles. When asked how we were and how Carter was, we were always “Great” “Fine” Happy” “Wonderful”. I figured that most people really didn’t want the truth and I’m not sure I could have been honest with them, because I would have had to be honest with myself. It is support that has helped me see the genuineness in the people surrounding us.  I have realized that in those moments where I felt completely alone; there was always someone with me, supporting me and pulling me through.

 FPIES is a very isolating condition, as is any chronic illness. There are times when going out of the house is too much.  Again, support comes to the rescue with the knowledge of people who will make their homes safe for Carter; who will do their best to understand why it is so scary for us.  People who break through the isolation because the more people who stand in the maze with us, the brighter the light is and the easier to is to see.  I have made some incredible new friendships and have strengthened others along the twists and turns. These are the moments when I realize that with the struggles of FPIES also come the rewards.  So the next time someone asks how we are, I will tell them. The next time someone asks if there is anything they can do to help, there will be something.  And we will walk through this maze together.

Relaxation and Realities

We are getting a weekend away . . . Just me and my husband. The boys will be staying home. I need this, we all need this, that’s what I keep telling myself. I say this as I arrange a list of Safe foods for Carter.  I say this as I write up a care sheet for his meals. I say it as I pack up his medicines, with a huge note of caution not to get them mixed up with the medicine for the Big Boys.  I will continue to say this until I have dropped them off and are too far away to turn the car around and bring Carter with us.  I know he is in good hands, amazing hands.  But there is a very real danger of him having an accidental ingestion and a reaction while we are hours away. 

Another FPIES mom wrote today about the realities of FPIES, the hidden realities that are seldom talked or even thought about.  There is no such thing as relaxation anymore.  It has nothing to do with having children or being busy maintaining the house.  It is impossible to escape this condition.  I do not mean that I obsess over it or try to think about it, but it has forever changed my views on the world around me.  We were out to dinner one night at a favorite family restaurant, a favorite for their soup. My husband loves this soup! It is one of the main reasons we go.  As we were eating, I looked over at the next table to see a little girl sitting in a high chair. She was at least 6 months younger than Carter.  Her mom was giving her tastes and bites of soup. A soup, I realized, that Carter may never get to eat. Those are the moments where my heart breaks for him.  It is the experiences like that, ones that remind me of what he is missing. 

I realize now, how much of live is focused, center and surrounded by food.  How many “Baby’s First” moments involve food? First Fruit. First Veggie. First Holds a Spoon. First Drinks from a Cup. First Birthday.  I am learning to shift the focus away from food.  This hasn’t been an easy process. My father was a chef.  Growing up, life was all about food. Holidays are so much about the food.  Halloween. Thanksgiving. Christmas. They are fast approaching and I am already trying to figure out how we will handle them. It is yet another hurdle that I never imagined. Maybe that is one of the scariest realities. What is out there that I haven’t even thought of yet?

Carter amazes me every day with his warm and sunny personality. He is learning so much about the world around him, adding new words to his vocabulary and finding new ways to interact with his world. How does a little boy who has lived so much of his life in constant pain, greet each day with such hope? There is a smile on his face every morning when I walk in his room. He stands there in his crib, so happy and so full of life.  It seems to me that he was given this personality to help us all cope with the FPIES reality.

I am amazed that his body didn’t just shut down in those early months. I am baffled that he doesn’t fear the doctor or his sippy cup. I am honored that he has put his trust in me and kept it there, even though I am the one who has fed him the foods that made him so sick. He is so strong in ways that far exceed his age.  All I want to do is provide the life he deserves and to try to give back to him for all that he has given me.

Today . . .

Today.  The easiest time to deal with, is now. The future is too scary and the past is full of guilt from all the missed signs.  As I was updating, Carter woke from his nap much earlier than usual and screaming. I walked upstairs and could smell the diaper before I even reached his room. This is never a good sign. His diaper had exploded. It completely covered his back all the way up to his hair line. I can’t say I was surprised. We had a birthday party at our house for Middle Man’s 3^rd birthday and we went to another party Sunday. Every time we encounter a situation where there is unsafe food, we have some sort of minor reaction. He was cranky and showing obvious signs of discomfort this morning, so the diaper was the next predictable step. He seems so much better now and is finally drinking his formula today, after a 24 hour refusal.

So what do I do about food exposure? Keep him home all the time in a bubble? Never let him experience the normal parts of childhood for fear of food? Miss out on so many family memories in case he finds a crumb on the ground? No, I can’t and won’t do that. I have just become hyper vigilant about food. It’s stressful, but it allows Carter to have normal experiences. The broom, vacuum and dust buster have become some of my closet friends.

It does seem that every time we go out and are around food, his sleep is disturbed. I thought that maybe it was an accidental exposure to something. My husband took a lighter approach and thought that maybe the food gave him nightmares. I wonder if food’s as scary for Carter as it is for me . . . 

We can’t stay at home in our bubble forever, especially not with two older boys who want to and should enjoy the world around them.  But we risk another severe FPIES reaction. So we limit dinners out and even eating in front of him. I have lunch while he naps so he doesn’t cry for my food.  We have been lucky so far, but I wonder if the risk is too high.  I need to draw a line in the sand; I’m just not sure where to draw that line.

Soy shows us how Big the Maze really is . . .

Milk was out of the equation, so we tried soy.  I gave him 4 ounces of soy milk at lunch. Then I gave him another 3ounces before his nap at 3 pm. He drank it so well. No problem with the flavor at all. He went right to sleep.  An hour into his nap, he wakes up crying. He’d thrown up. I got him up and put him on the floor so I could change the bed. As I was changing the sheets, I looked down and knew something wasn’t right. His little body was hunched over on all fours and his head was hanging down against the ground. I bent down to pick him up and he had thrown up on the floor.  His body was limp and his eyes were so sad. I remember his eyes most. They are burned into my memory. I looked into his eyes and saw a terrified little boy who knew something was not right. The vomiting continued. Every couple of minutes he threw up. There was no energy in his body. In between vomiting, he just laid against me and cried.

 It was his pain cry, but it was so much worse than I had heard it before.  That’s another part of FPIES that is often forgotten by the medical community. Their bodies are in extreme pain during a reaction. It is not just the outward symptoms, but the pain they feel deep in their intestinal tract. It is a pain we cannot help or fix. It broke me.  I have never felt so helpless. 

As the vomiting progressed, he had completely emptied his stomach contents. He was lethargic. His eyes closed. And I could not get them to open. He would not hold his head up. The only time he moved was to throw up bile and as his eyelids flickered, I saw that his eyes had rolled back in his head. He was officially in shock. 

All this time, I was on the phone trying to get help for my littlest one. I called the advice nurse at the hospital. I was put on hold and waited and waited. I finally got to talk to a nurse who was sympathetic, but told me it was a stomach bug. The whole time I was on the phone, I had a nagging feeling that I needed to hang up the phone and call 911. I knew Carter needed help. After I got off the phone with the nurse, I held him and waited, waited for him to come back. After four hours of vomiting, he slowly came around. He drank 4 ounces of formula and slept. He slept all night and much of the next morning. I know now that his body entered into shock and I should have taken him to the ER to have an IV started to replace the fluids. It was another 24 hours before he had a wet diaper.  He had numerous mucous and blood-filled diapers and a horrible diaper rash that lasted for several weeks. The primary reaction may have only lasted 6 hours, but the secondary issues lasted for over two weeks. That’s when I realized that for the last 11 months, we had been roaming around in this maze with the completely wrong map. Instead of finding a way through his discomfort, we were inadvertently making it worse and getting more lost all the time.

As scary as his reaction was, I also know that many FPIES kids suffer far worse than Carter. I have talked to a mom whose son was in the hospital for several days and required numerous IV bags in rehydrate him. I believe this reaction triggered something in his body. His body went on high alert to all foods. He stopped digesting foods. Everything went through him and came out whole and undigested. He began to loose weight rapidly. At one point he fell off the growth chart all together. I removed all soy from his diet even in trace amounts. I started researching his symptoms and found FPIES. His soy reaction was a classic reaction. And then I met some other amazing moms who have dealt with FPIES and were able to help me start to create a little more of this map. I am forever grateful to them for all their help.

When I removed the soy completely from his diet, his “cold” went away. That’s when things really started to make sense. His refusal to eat squash, green beans and peas were not just stubbornness. They were foods that cause reactions.  Although the cold went away, the diapers continued to get worse. At Carter’s worst, we were at 7 to 8 poop diapers a day. All of them were mucousy diarrhea that instantly burned his skin. We carried several changes of clothes for each of us in the car because most of the time, the poop was so bad it exploded out the top or the sides. Our world was covered in poo.

 We had to remove everything from his diet except the formula to find the cause. We reintroduced each food and waited a week to see if there was a reaction. The biggest blow was gluten. When we had to remove his favorite snack from his diet, veggie straws, we all took it hard.

Carter has undergone extensive allergy testing, all of which came back negative. His diapers have been analyzed, his blood has been studied. All of these have come back negative for any obvious issues. We even had an endoscopy done to rule out Celiac disease, among other things. Every turn has been met with another wall or another dead end. FPIES is not something that doctors readily understand or even accept. We have mapped out much of Carter’s treatment plan on our own. I was fortunate enough to find an allergist who has heard of FPIES and she’s only four hours away. She has been a great help in deciding what foods to trial next and how to go about introducing them. There is so much more left to tell, but at least now we are relatively caught up. I will occasionally post a “Flashback” of other events and encounters in this maze, but now I can start to focus on Today, because with FPIES it’s the only way to survive.

Time for solids . . .

After we got Carter on a formula his body could handle, we introduced rice cereal into his diet with the hopes of keeping more of his formula in his little tummy. We used Gerber’s rice cereal, which is the typical next step for all infants and recommended as the best first food. This is not the case in FPIES children. There are two things that are very wrong with the “logical” next step we took: Rice is a very common trigger in FPIES kids and Gerber is notorious for cross-contamination in their foods.  Of course I knew neither of these things as I gave Carter his first helping of rice cereal. He got incredibly cranky and lethargic.  It didn’t help his vomiting, just made it easier to clean up because it was thicker. It also made him horribly constipated. I assumed the crankiness was from the constipation. The FPIES flag still hadn’t gone off yet, but I knew something was wrong. I told the pediatrician, who seemed a little puzzled, but suggested we switch to oatmeal. At this point I started to do some research and found out about Gerber’s cross contamination issues with their rice cereal. So we switched brands to Happy Baby, which does not have any contamination issues.  I tried their rice cereal and got the same results. At this point, we knew for sure that rice was a no go, so on we went to oatmeal. I used the Happy Baby oatmeal and Carter did great with that.

After the oatmeal success, we started introducing new foods, one at a time, a week apart. He seemed to be doing great with those.  We also started giving him finger foods: crackers, pasta, puffs, teething cookies. It was the normal progression of foods.

 Looking back on it now, he was never thriving, healthy and happy. I had no idea that he could be any different. He was leaps and bounds above what he had been on the other formulas and I thought this was his normal. The whole time he was having minor FPIES reactions, a build up was taking place in his body. Many of the foods we were consuming had trace amounts of soy in them.  These trace amounts gave Carter a constant cold, over 5 months of running nose, cough, sneezing and watery eyes. The cough kept us up at night for so many nights. The runny nose would gag him in his sleep. Many nights, sleeping upright on our chest was the only way any of us got sleep. I was told that he was too young to have seasonal allergies and since his body wasn’t presenting signs of a typical food allergic reaction, there was nothing we could do.  He was even diagnosed at one point with RSV and given inhalers because he was struggling to breath. We thought he had croup because his cough would worsen at night. The nights that his cough worsened, we directly related to what he had eaten during the day.  I was starting to think that maybe we just had a sickly baby.  His system was just sensitive to anything he was exposed. I still hadn’t linked it to foods though.

When we reached about 10 months old, the pediatrician suggested that we try to see if his body could now handle dairy. We were to start with yogurt and see how he did. I was so hopeful that he had outgrown his culprit foods.  Carter was even tested by an allergist and he showed negative to dairy and soy.  We gave him yogurt, and waited. He got cranky. And whiny.  And incredibly constipated. “His body just needs time to adjust. Keep going”. Two weeks later and no bloody diapers, so we tried milk. He drank it like a champ! Within two hours he had a death grip on my leg. He was whining non-stop. There was nothing I could do to console him.  I thought maybe it was teething. We gave him some more and waited. Then the diapers came. Mucousy, runny, bloody. Scary.  Milk was a no go, again. Our oldest son couldn’t tolerate milk until he was 2, so this wasn’t new territory for us.  We could do dairy free.  I still felt like I had control of the situation.

The Beginning of the Maze: Formula Daze

Carter was born in May of 2009. He was born at 35 weeks, which classified him as “near term”.  I was on modified bed rest for over a month due to early contractions. His labor was pretty uneventful. After he was born, we were able to give him hugs and kisses and hold him. His breathing started to get irregular and he was taken back to the nursery and put on oxygen for 3 hours. He was returned to us sometime after midnight. He was beautiful!! He was so small and so perfect. Due to him being early and in conjunction with the fact that my milk takes over a week to come in, Carter was supplemented with formula. The hospital gave him Similac, the regular cow’s milk formula. 

Carter was less than 24 hours old when he projectile vomited for the first time. He woke from a dead sleep and emptied the entire contents of his stomach all over himself and the side of his little hospital crib. It was curdled and not at all digested, although it had been hours since his bottle. I took a deep breath . . . we had seen this before. Our two older boys were both intolerant to milk and ended up on soy formula.  I buzzed for the nurse and asked if they had any soy formula. The hospital didn’t have it readily available in the nursery, so she was off to find the doctor and see if they could get us some. We went home before they were able to get us any soy formula.

I continued giving him the cow’s milk formula in hopes that the nurse was right, and it was just a fluke one time thing. Looking at the situation now, through FPIES eyes, I have learned that there are no flukes. He continued to spit up after every bottle and was put on Zantac for reflux.  He was constantly fussy and always in pain.  I really thought it was the reflux . . . until he had his first bloody diaper. I was sure that the formula switch would fix everything.

He was three weeks old when we switched him to soy formula. And things went from bad to worse. The reflux worsened. He wouldn’t sleep, wouldn’t eat, wouldn’t do anything but scream.  He looked like he was frightened all the time. My husband went to the store late one night to find another bottle style in hopes that he would eat. He ran into a woman in the bottle aisle who recommended the NUK bottles. Thank goodness for those. He was finally eating, but in pain the entire time. Just as I was beginning to wonder whether his body was rejecting the soy formula, we had our next bloody diaper.  He was six weeks old when the pediatrician called to talk about our options.  His recommendation: Alimentum, a hypoallergenic formula where the proteins are broken down.  They are broken down so the body will have nothing to react to, he tells me. He also said that it was really expensive and didn’t taste good, so we might have problems getting him to take it at all. I cried. I cried for the suffering he was enduring, for the stress of the entire formula switching process, for the time it would take to notice a difference.  Our pediatrician said to wait two weeks to see if it helped him.  Then I looked up the price of the formula. Our current soy formula was 15 cents an ounce. The Alimentum would be 26 cents an ounce.  I was nearly double the price! I will never be able to thank my husband enough for his reaction when I told him we had to switch formulas. He didn’t even hesitate. He told me we’d do whatever we had to do to keep Carter healthy and happy.  That has been our motto ever since.

Once we switched Carter to the Alimentum, the difference was evident right away. He started eating better and sleeping better. He was a much happier baby. We were still battling reflux, trying to find the right medicine and the right dose to help him reach real comfort. I didn’t know it at the time, but the reflux was his body having minor reactions to the Alimentum. Again, the FPIES eyes have made it all clear now.

Even though he was doing much better, he was always in pain. There was never a full night of sleep for anyone in those first 6 months. Carter still vomited . . . all the time. There was never a night where I wasn’t awakened to him vomiting in his sleep or coughing and gagging as he threw up in his sleep. There were mornings where I would go into his room and see that he had thrown up in his sleep and never even woke up.  Most nights I just prayed for morning to come.   After every bottle, something always came back up, sometimes it was a mouthful and sometimes it was a full stomach emptying. It became our way of life, several clothes changes for both Carter and me everyday and blankets as burp cloths.  Then our pediatrician suggested trying some rice cereal to help him keep his formula down, and our FPIES road really began.

Here We Go . . .

It has been 6 months since Carter had his first official FPIES reaction to soy milk. On that very real and terrifying day, we have found ourselves deep in the center of a twisting, winding and seemingly never-ending maze. In the beginning we had no light, no map and very little hope. We have done a lot of research and seen a lot of doctors. Carter has undergone countless blood draws, tests and procedures. Our family was shaken to its core and all the things we “knew” no longer seemed to be. But through FPIES and because of it, we have found answers, we have found light and we have drawn our own map. We still don’t know our way out and sometimes we don’t even know where we’re going. But we know we will find a way out and maybe we’ll be able to help some others too.

We have finally found Carter’s baseline. All the offending foods that made him so terribly sick have been removed from his diet. He thrives now. He is no longer surviving as he did for the first year of his life. His weight is stable. His health is great and his mood is amazing. We are in a good place now. But it wasn’t always that way . . . I will update this blog with Carter’s full history and our story up to this point. When I look back on how far we have come, I know we will not be in this maze forever.