{Global} darkness turns to light

I can so vividly recall that February day in 2012 that changed our lives forever. Two weeks after our son was born, I knew something wasn’t right. He cried, and cried in agonizing pain as I coddled him as tightly as I could, wondering why this was happening? Did he have colic…whatever that even means? Was it the one glass of champagne I had drank the night before at my besties wedding? Whatever it was, in my heart of hearts, I knew something was wrong.

He did have jaundice that seemed to last longer than usual, and he wasn’t gaining back his birth weight as fast as I, or the doctors, had hoped, but other than that, he seemed like a ‘normal’ healthy boy.

Mothers intuition is no joke. I have always felt in tune to my body and prided myself in my ability to read people. Fortunately my husband, and my doctor agreed.

After several visits to the pediatrician to figure out why my son would have these crying spells that would wake him from sleep only minutes after falling asleep, why he projectile vomited, and why his poops were the colors of a mossy swamp forest, and the most sweet and rancid smelling things my olfactory system had encountered.

His pediatrician believed me that he had a calm and kind nature and that something more serious must be causing what he called, his “excruciating pain.”  He checked his poop for blood, which I could not see, and sure enough there was blood. Lots.

He told me it was most likely something I was eating and passing through in my breast milk. He told me to give up dairy and the remaining top 5 allergens. Not what I wanted to hear, but of course I did it.  Anything for my little guy.

Sadly, despite having him now being on acid blocking medication and my new elimination diet, he continued to be in pain, have blood in his stools, and not thrive.

My tenacity and his pediatricians willingness to listen to all my concerns and tears, brought us to the conclusion that something in my diet was effecting him negatively.

I then went on the top 10 elimination diet, was stricter than ever with what I ate, and he continued to still have episodes. In fact the only time he did not appear to be in pain, is when I would give him a special hydrolyzed formula to heal his gut, per the doctors request, after having a severe episode.

At 4 months, we went to the allergist who very quickly diagnosed him with FPIES. Food Protein-Induced Enterocolitis Syndrome (FPIES) is a type of food allergy affecting the gastrointestinal tract.  What it means, is no allergy test can tell you what to avoid, but you can and will (most likely) outgrow it at a young age.

The allergist told me at the time, he had only diagnosed a handful of people with this in his entire career.

My heart immediately hurt.

My eyes, flooding with tears.

My mind swirling with thoughts. Why me? Why my son?

The questions poured. I can’t breastfeed anymore? He will have this for how long? How do we manage this once he starts solids?

The allergist admitted that he hardly knew anything about FPIES. He said he would most likely outgrow it by 18 months, and as long as he avoided the “trigger food” he would be fine. Okay. Seemed easy enough. NOT.

I remember leaving there thinking it wasn’t so bad. It sounded awful, but the little information he gave me, made it seem easily manageable and not life threatening. At least we had an answer. The worst is over. Right?

I guess in a way that is true. Half the battle is not knowing.

Sadly, so many still know nothing about FPIES. Not just friends alike, but doctors, dieticians, Gastroenterologists, etc.

Recently we had to take my son to the ER, for a nurse-maid elbow, and not one nurse or doctor there, had ever heard of FPIES. Many strides are being made to ensure awareness is raised, and now October 14th has been declared “Global FPIES Day!”

fpies

But knowing is only half the battle.

Many days are still unknown.

We have not had the opportunity to trial every food. It seems easy enough. Just give him a new food… but its not. It is easier to stick with our 17 safe foods (25 including ingredients). Partly because he himself is adverse to trying new foods and textures, and partly because it is a inconvenience, not to mention horrifying when he has a reaction.

No one likes to see their children in pain, and imagine knowing you were the cause of it. I felt that everyday. Until he was strictly formula feed and again once solids were introduced. We trialed close to 40 things before we found 2 safe foods for him.

The gut wrenching feeling that you are making the wrong choices. Not just with food, but also as a parent.

I still cry when I think about the day he can eat cake and have “e cream” that he is always talking about. He never gets sad or begs for other peoples food, instead he looks a it fondly and says “sissy” or “mommy” or “daddy” to whomever he sees eats the particular food most often. It is adorable and sad all at the same time. Maybe a year from now he will be able to eat those things.

For now,  when you see my kid eating a {homemade} popsicle for breakfast, or potato chips for lunch and pancakes for dinner, just know it did not come without trial. I wish I didn’t have to rely on his nutrition to come from an expensive can of formula, or potatoes, but it is what it is.

Life is what you make of it. I think he thinks his life is great. Most of the time, I think his life his great.

The darkness I once felt, and some days still do, are being lightened by recent food passes, recent awareness efforts, and the support I get from his teachers, family and friends. He will out grow this. I will too.

I hope.

ahb

ahb2

Xoxo,
Magazine Mom

….doing my part to spread awareness, today and always.

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7 thoughts on “{Global} darkness turns to light

  1. You are an amazing mom. October is also National Sensory Processing Disorder are awarness month. Both of my boys have different levels of SPD. It is still misdiagnosed and so many kiddos who have ADHD, reality have SPD. People think if your child has SPD they are autisitc. not true. People who don’t understand it and are uneducated think your child is just being a spoiled brat and misbehaving. When really they are having a hard time processing their world around them. My nerves run very thin and I try so hard to keep it together. I appreciate your post, to remind me we are not perfect, we are moms just trying to do what is best for our children. Ryan also has nut allergies to top it off. Thankfully it is not peanuts. We take the good with the bad. Miss you

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