Tuesday, August 11, 2015

A Slice of FPIES

We've had foods trials, little sleep, lots of poo pics, doctor's visits, and big changes over the past month and a half.  Here's the run down.
After getting to a "baseline" through my total elimination diet we were able to begin trialing foods.  Each food started at a 1/2tsp and increased each day.  The challenge here was not just watching for a reaction but also trying to get her to eat.  Introducing foods at 10 months wasn't as smooth as I had hoped.  She had big texture issues so everything was pureed to almost a watery consistency to get her to take it without screaming.  The feedings usually lasted 20-25 minutes even though we were going through such a small amount. 
With apple we saw a chin rash that I equated to drool. 
Then came pear, she really loved the taste but we watched the rash on her face spread to her cheeks and become more raised and raw looking around her chin. 
Next was carrot, which she hated and began showing signs of food aversion.  She started to refuse letting any of the food near her mouth even the previously beloved pear.  Nothing went in her mouth without a fight. 
With each food we kept the one before but we watched diapers go up and down from good to bad constantly and sleep worsened.  
At that time we were seen by Dr. Mukkada at Cincinnati Children's.  We were really pleased with our visit, and though we didn't walk away with any earth shattering information we felt like we were understood, listened to, and given some assurance that they were there to help us as much as possible.  In his words "this diagnosis is as clear as mud", given the fact that it's rare, and there is little research that has been done, and zero testing available. Each case is very individualized and much like a science experiment.  (which we had already figured out.)  Her weight had dropped to the 5% but she isn't losing weight which was a good sign.  We also met with a dietician who was able to give us some guidance on what foods to plug in next for a trial.  We were told to watch her face rash and a combination of other things to determine if we should pull a  food or not.  They gave us a sample of Neocate and encouraged us to begin trialing it much slower than we had done with PurAmino.  The possibility of my milk drying up on such a limited diet would have been a bad situation if she had no formula at all either.

 We started trialing avocado and mixed it with pear water to thin it out to a consistency she would handle.  It was going well and we decided to keep foods in "trial" for 7 days on 2 days off then reintroduce so we could really see how they would effect her.  The more we continued with food the more we saw symptoms worsen with her rash, diapers, and sleep.  Because we had moved through at a pace of every 5 days before it was hard to determine which was the offending food.  After consulting with our allergist we pulled pear and carrot, but symptoms continued, pulled apple and avocado, and then there were none......  A month of working through foods and nothing.  Left with nothing. 
Maybe it was the food trials, maybe it was the fact that I was beginning to mentally, emotionally, and physically fatigue on my diet of 14 foods, or maybe it was the fact that we just couldn't get her gut back to normal after foods, but I hit my own personal Berlin wall.  I had hoped that the introduction of solids would mean better things, but seeing that it was going to be a complicated road I decided that I could no longer be a factor in this experiment.  For 10 months I had questioned myself over everything.  Any time she had belly pains, screams, sleepless nights/days, mucus/blood/explosive/liquid diapers, I blamed myself.  I wondered what I had accidentally eaten, touched, washed with.  Did I use the wrong soap, did I touch her after eating without wiping down?  Did she find a crumb? 
Done.  I was done.  Knowing that the last formula trial ended in a 36 hour stand off, we took a deep breath and stepped into this boat carefully. 
We had been giving her one bottle of breastmilk, one day a week for over 4 months, so we knew she should be comfortable with a bottle.  We tried with a 1/2oz of Neocate to 5oz breastmilk.  No way.  No how.  Not happening.  Amino acid formulas are nasty to smell let alone taste.  Our smart girl could not be fooled that easily.  So we began S l o w e r.  In a 6 oz bottle of breast milk, 7ml was Neocate.  She drank it.  I took a breath, and from there we moved forward.  Every bottle or two we would increase the amount of formula by 7ml using a syringe.  If she resisted and refused to eat then we would wait till the next feeding and stand at that amount for a few bottles before increasing again.  We never increased at night, feeding her a bottle was already difficult. 
The first two days of trialing with the formula we were walking on egg shells and so happy that she was taking any formula no matter the amount.  At night I was still nursing because it was easier and it is the time of day when she seems to want comfort the most.  After the second night we decided to do only a bottle.  I pumped around the clock for almost three weeks and when I wasn't pumping I was making bottles and begging her to drink them.
Of course no trial would be complete without an unexpected variable coming into mess with our science experiment.  Enter teething.  Two to be exact.  So we made a trip to our pediatrician to make sure we weren't also getting an ear infection with all the runny nose action.  It was always in the back of our mind that maybe the teething could be contributing to different diapers too.
We had been moving along at a good pace until we reached half and half doses.  Three days of nasty mucusy diapers 7-8 in 24hrs, terrible sleep, and fussy behavior we feared she was starting to fail the formula.  She had been teething as well so we didn't feel we could say for certain what was happening.  We put a call in to our doctor but it was over a weekend so we had to wait.  While out of town we had purchased a gallon of purified nursery water to mix the formula with.  We are 99% sure she had a reaction to the water, because within 12 hrs of being home her symptoms were better and it's been uphill from there.  Failing water....I had read it could happen but man FPIES is crazy.   Now we know to travel with our filtered water from home.
There have been ups and downs while her gut adjusted to the formula but we believe we have found our fit.  Over the last week we have seen what we now know to be "normal" Neocate diapers.  We see a happier girl, we see her sleeping.  We see hope.  She will continue to have Neocate and let her gut rest for a full 30 days before starting back into food trials.  Our prayers have been answered in finding a solution that works for her.  She's been given a baseline and we are hoping good things are around the corner.  In the mean time I'm happy to be able to eat again.  10 months is a long time to go without some of the yummiest foods you love, but 3.5 months of eating the same 14 foods over and over again without a break has made the world of eating seem like a luxurious experience. 

2 comments:

  1. I had tears in my eyes while reading this. You are seriously such an inspiration to us all. Happy you are making progress and hope you continue to get some good news. Thinking about you guys often.

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  2. Oh, sweet Elizabeth! Thank you for sharing your experience. My heart just breaks for sweet ML. You are such a fierce mother full of grace. My prayers are with you all.

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