Mothers Intuition

Have you ever had an instinct? An instinct that begins as a gnawing...Then grows into a raging burn; a burning instinct that something is wrong...

Your baby continues to get sick from the very foods he is supposed to thrive on. I did. I am a mom of a little boy just diagnosed with FPIES.

And that burning feeling now? Extinguished. My instincts? Stronger than ever. Guiding me, with my faith, as we navigate through the murky waters of our new world created by something called FPIES.

"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."

Saturday, June 19, 2010

Our "Sam Syndrome": from birth to diagnosis

Our "Sam Syndrome": from birth to diagnosis










I am a mom of 4 boys. I’m not new to this mommy gig.
Maybe the early signs should’ve been red flags: bringing him home from the hospital and having blistering diaper rash, eczema that started in the first week of life, gassiness, and explosive diapers. But I’d been through all of that before, our first born had milk protein intolerance with allergic colitis at 8weeks old, colic from 3-16weeks old and reflux with throwing up until he was 19 monthes. We had had our share of crying, gassy days filled with projectile vomiting. So I wasn’t alarmed when I began to see all this again. I did see all of this in our 3rd son, but he was only milk protein sensitive. So, I thought I was going down sensitivity road again.
I was exclusively nursing, as I had with all my other boys. I knew what I had to do so I started changing my diet to find the right amount of dairy my little guy could tolerate, this seemed to help some.

He was only a few weeks old and the middle of the night wide awake times began…this one was new but again I wasn’t too alarmed- just considered myself lucky that I had had 3 good sleepers before him. Also started to notice, although we enjoyed the cuddle time, that the little guy liked to be held upright for naps- he would wake up out of a seemingly deep sleep if we laid him flat. So, we created a “nest” for him in his bassinet and crib – with a wedge and a broken down bouncy seat for soothing vibrations (that he seemed to respond well to) and this helped us get some sleep…some nights.

It was approaching time for me to return to work and so trialed him on some formula, for supplements as needed (unsure how my production would hold up). This brought on projectile vomiting from the first ounce. We chalked it up to weird coincidence and tried another ounce in a week or so, only to have more vomiting. Based on our past experiences, we recognized that he wasn’t going to do well with regular cow’s milk formula at this young age. My supply was holding up so we decided to just hold off on supplementing with formula at this time.

But now, at 3mo. old we started to see a colic behavior creeping in- each evening seemed to get worse. We were very busy so we thought he was just picking up on the stress in the house of me returning to work, school starting, etc. My husband works 24hr. shifts, so our 9yr.old steps up to be the "man" of the house and help mommy out when he is on shift. He would tried so hard to help out, it broke my heart and made me so proud all in one breath. It took his words a month or two later, saying “Mommy, what happened to him?” for me to start to really realize I wasn’t the only one noticing that his fussiness was getting worse.
I had started to change my diet around more and noticed immediately if I had more than ½ cup of dairy in a day, I would have a wide-awake, gas filled little baby at 2am. So, I limited my dairy- not having any straight dairy but reluctant to pull all sources out at this point- still not knowing if it was sensitivity or full intolerance and since we hadn't seen any bloody stools, I was convinced he had a sensitivity like son #3. I did notice keeping control of the dairy was helping some but some days it was back to the same, wondered if he was affected by other things (?wheat) in my diet- speculating that with my IBS, he was getting incompletely digested proteins through my breast milk.

We were approaching 4mo,so we decided to trial some rice cereal to see if the thickener of it would help with what we speculated may be some refluxing issues. This seemed to work for awhile, but that would be the course of things to come for the next few months...we were slowly losing the grasp on what was really affecting him and what was really working. We turned back to the suspicion that my production was low, so we decided to trial another formula- this time trying soy. Soy brought on gassiness, stomach cramps, reflux, burping, and a chest congestion that sounded so badly after 5weeks, I feared he had croup or pneumonia. After almost 2mo of sporadic 2oz.supplemental soy bottles, we decided he must be building up sensitivity to soy. We stopped soy. He also was not accepting new foods well, and beginning to refuse many meals.
Our little guy was going downhill fast, we needed to find something that would help take away all his pain as well as nourish his body. We moved on to trial Nutramagin, followed a 100% no soy/no dairy diet (for me and him) while I continued to nurse him, then Nutramagin AA, then a reflux medication. A week on the new medication and his stomach aches doubled and his appetite decreased. His body was not responding to any of our many efforts and he was getting so sick and his pain cries were so intense.

That instinct? Now burning flame in the pit of my stomach. Our little guy was experiencing pain day and night. It was getting more heart wrenching to see....stand by and not be able to do anything, or enough of anything to help him escape this now growing constant pain.
We received a GI consult with recommendations for a new reflux medication and an elemental formula (and to stop nursing). We tried the reflux medication right away but it made him so sick within the first doses and he started to refuse to eat, and we then ended up in the hospital where we got him eating the new elemental formula- Elecare, but this only brought on daily throwing up. We waited for his stomach to adjust to the new formula. We proceeded to an upper GI and then to a Endoscopy and sigmoidoscopy work up hoping to find out what was going on inside our little guy that was keeping him from tolerating the foods designed to nourish his body. The tests confirmed that he did not have Celiac Disease or Eosinophilic Esophagitis but something was still not right with our little boy. We switched formula’s from Elecare to Neocate (another elemental formula) and the daily throwing up slowed down. We tried Neocate Nutra and the violent vomiting began. We would watch as he emptied the contents of his stomach, he was so sick. Then we connected it to the Nutra, we stopped this and the violent vomiting stopped…unless he got a crumb from the floor dropped by his brothers having a snack. He remains so super sensitive to any ingestions of foods.

We knew something was still not right…months on an elemental diet we thought he was ready for re-introduction of foods. And where do you start reintroduction of food? Rice? This brought on days of vomiting and agitation. With this, we begin to make some connections in the literature: could it be FPIES? We went to the next food, something he enjoyed before we stopped food- sweet potatoes. This brought on many days of colic and runny stools and everything the same as rice, except the vomiting- all from just a few teaspoons of pureed sweet potatoes on one day. This was getting to be too much again. We had consulted with a RD (Registered Dietitian) and she brings up a possible connection with FPIES. Here I am coming across this FPIES again. We continued reading the literature and connecting the commonalities. Have we finally found something that could finally explain what has been ravaging our son's digestive tract?
Where would we get an expert opinion? I dove into the world of online support groups and found and connected with other mom’s who echo my son’s experiences, echo the food sensitivities and reactions to foods, echo the anxiety of having an ill child with a syndrome of unknowns….many have gone to this place called CHOP- what is CHOP? I soon find out….Children’s Hospital of Philadelphia, and they have a program for Eosinophilic Esophagitis and in this program they have become one of the leading experts on FPIES. FPIES is essentially Eosinophilic Esophagitis ruled out. And that is what Samuel had- something that, to his doctors here, looked and acted like Eosinophilic Esophagitis but scope had ruled this out.
We call and get their earliest appointment, and go to PA with much hope and anticipation for some direction on how to proceed. The experts at CHOP recognize the signs and symptoms almost immediately. And our son is diagnosed with FPIES, a mere 4days before his 1st birthday. Happy Birthday Little Man!! Now, we have an action plan, we have an Allergist, and we are pulling together our resources to help us care for our son as we journey down this new path.



5 comments:

  1. Wow its almost like you wrote our story.

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  2. I am so glad I found your blog! I think an FPIES diagnosis is around the corner for us. Did it come from GI? GI referred us to allergy, my baby is now almost 9mo. I am looking forward to exploring all your links.

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  3. So glad you found my blog too! I have it set up as a hopeful resource for FPIES information (and try to keep it organized)!
    Our diagnosis came from an Allergist, and confirmed by a second allergist (not that we needed it confirmed but our doctors did). GI's can diagnosis too- depending on how aware your GI is but this is primarily an Allergist's known diagnosis. Although awareness is being raised and more and more doctors are learning of this to help the families through it.
    Please let me know if you have any additional questions. Also- check out some of the online support groups if needed.

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  4. Im so glad I found your blog, my story is very similar my daughter is 10 month but I have a 2 years old and I tough she was going to have the same thing making a long story short he can’t have gluten, and thank God things got 100% better after we found that out, but my baby couldn’t tolerate any formula, not even my breast milk, so they put her on TOLEREX, But so far I haven’t heard anybody taking it, but that’s the only thing she could take I started her on solids but as soonest I tried the rice cereal she vomited so much I had to take her to the ER. So she is only on veggies and fruits and on two reflux medicines and she gets really bad reflux and hicups. I’m going to keep reading your blog, and congratulation for such a great thing you are doing.

    Nubia K mother of Benjamin Gluten intolerance
    and Abigail dont know yet

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  5. Hello! Sorry for my delay in reply (we've been out of town). I am so sorry to hear of your struggles - with BOTH children...you must feel empowered to be able to recognize the symptoms of intolerances with your second after going through it with your first. I hope you can continue to find other foods for her to tolerate. She didn't tolerate the other amino acid based formula's? I had never heard of Tolorex but just looked it up. Have you checked out facebook or babycenter support forums- TONS of information on there. Kids with Food Allergy has one as well.

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