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!