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.
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.
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.
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.
