Friday, December 2, 2011

The Lasting Effects of FPIES

Last night we were up with Ellie all night vomiting. Again. Her not sleeping through the night has started to be a real factor in our home, and incidents such as this can throw me into a feeling of despair quite quickly. Besides being just plain tired of doing this for over two years, I am beginning to believe that her vomiting episodes send me into a sort of PTSD.

She went to bed complaining 'owie' and not wanting to lay flat, and it was somewhere around 12 am (I think maybe?) that she started vomiting. The next two hours consisted of thoughts like this:
I'm so tired.
So much vomit.
Is it the acorn squash after all?
Does she have the flu which she has never had?
I'm so behind on life.
I need sleep.
What is the matter with her?
She is going to wake up Moriah.
Is this an FPIES reaction?
Is the beef broth bad?
Jason really needs his sleep.
Is she hurting?
Did she eat something we didn't know?
I really need to get some work done.
Please, God don't let it be the acorn squash.
Why is she STILL throwing up?
I never even had a chance to get ready for bed.
She doesn't have a fever.
on and on....

By 4 a.m. I was just standing and sobbing. Ellie looked at me with her sunken eyes and said 'ok? tchu sad?', and I thought, 'holy cow woman. Get a grip!'

As I spend the day doing laundry I am able to step back and look at things a little better. And I am pretty convinced there is a fear factor that becomes engrained into every FPIES momma who has watched vomit after vomit after vomit without having answers. I can not count the amount of times I heard 'try this' or 'try that' or 'we really dont know'. And 90% of the time she reacted exactly the opposite of what they said. Thank the Lord we had a pediatric GI who said 'yes some are sensitive enough to react to soy lecithin', and an allergist who said 'yes she could be reacting to corn syrup'. Many doctors will argue those realities. When dealing with life, it is so.much.easier....to pass the buck and let Dr. Anyone tell you what to do. It is so much easier to use canned nutrition, or follow a check list, or just go with the flow of what is expected. And wait for the symptoms to go away.

Choosing anything else is hard work, and frankly quite petrifying.

But as a colleague and friend continues to remind me - nothing easy is worth it; its the hard stuff that shows our Maker. And it is no coincidence that it *always always always* happens after an event that causes us to feel blessed and uplifted, such as receiving 91 pounds of donated elk bones, or getting a safe new food for Ellie after months of waiting.

And the vomit? Too much beef fat in her bottles. Unlike people who feed themselves, Ellie is subject to whatever ratio we make regardless of what her body needs at that moment. It has been consistent that whenever we feed her a beef broth with too high of a fat content she stops digesting and we are unaware of the poor ratio until she begins projectile vomiting it all over the house.

I knew that was most likely the culprit. And today we are all recovering. But sometimes...I let fear take over.

3 comments:

  1. Nichole
    I wish we lived closer so we could make broth together, I feel like it's all I do anymore! I can totally relate to all you said, and I hope Ellie is doing better, I will pray for her.
    I have to say that Henry has had some similar responses with the more fatening broths. I tried drinking them myself just to see how it would affect me. Only a few hours later I felt nauseated, had reflux, and even felt severely weak, dizzy and extreemly tired. I felt like I would vomit but never actually did. I don't know if this is a die off effect or just not being used to the fat content of such rich broth. I have noticed with some rich broths, Henry has a more reflux symptoms, so I do wonder if its related to the fat content.

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  2. :) the broth get's easier. Though living closer for a broth play date would be fun! I know that I, too have had issues gagging on broth at the beginning. I did some asking around and apparently beef fat is just plain 'richer' than most of the others. That coupled with her lack of/limited digestive enzymes I think just causes this to happen. oh well. Pushing forward! :) Keep up the good work mama. SO glad to hear from you!

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  3. We're your children delivered by c-section? They say this may play a role

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