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."

Tuesday, January 31, 2012

Where did the month "push" trials get us?

Not far, backwards?

No, I've learned that all steps forward are just that- always moving forward.  Even if we can't see the progress in the moment or when it feels like a dozen steps backwards....always moving forward.  Faith that even when we can't see or understand something, there is always a purpose.

Since the last post of pressing through pineapple and on to potato, as we feared (but hoped not), he started reacting- but to what, we aren’t positive.   We were using potato chips for a potato trial, trying to get him interested in eating. He’s been surprisingly good about chewing food- even if it is in small tiny nibbles, for a kiddo who has had so little practice with foods. But he just isn't interested in trying new foods, it doesn't take much to make him leary of new foods, or even leary of his safe foods! 

I was mixing the zucchini into his muffins and his cookies; and then the egg as well.  He had vomit reactions to those and isn’t interested in his muffins now.  His cookies he has asked for but is rarely eating.  So, I thought for our potato trial, we’d use chips- they come in a bag and look like something his brothers would eat, ok- do eat.   He had them for a few days and then had a vomit session that we assumed was from the potato chips.   It was a rough vomit session and he wasn’t up for eating anything but his bottle for a few days…not even his pineapple juice.   Then, I made him his muffins- in an attempt to get him to accept them again and start trusting his food again.  These are from his safe ingredients- a recipe I adapted from a fellow mom's Merry Muffins and use as the base for pretty much everything- “biscuits”, “cookies”, waffles, and muffins.  Combining his limited safe ingredients, they make a cute little muffin.   He LOVED it and actually ate almost a whole one (a mini muffin in tiny nibbles that took him about 2hrs to eat), he also drank his pineapple juice.   Six hours later, he vomited.    The next day, he of course did not want his muffins but he did accept a few sips of pineapple juice.  Six hours later, vomit.  Ok, wait?  Is this a reaction to pineapple now?  Is this pineapple too rough on his stomach after potato fail?  Was potato actually a fail?   So.many.questions.  

He needed a few days to recuperate and our GI agreed.    The rule with an FPIES reaction- you wait until you are back to baseline; but we have a few factors in this "new" plan that we are supposed to be “pushing” him, he gets the TPN that helps his body cope following the reaction (the IV fluids he needs), so he is bouncing back much quicker and our GI wanted us to do this method for the next month- push things.  So, we started again 5days later, because he had been asking for his ‘chips’ almost every day.  Why is he asking for something that he reacted to?  He never does that.  Maybe it wasn’t the chips and it was the pineapple?   Only one way to know….so I tried a new brand of chips- Kettle.  The ingredients are: potato, and the oil is Safflower and/or sunflower (I wish it was just safflower like it says on the website), and sea salt.   He had them one day and did great.   The next day, I wanted to test out my new Vitamix and make him a juice, which I did – and combined a few fruits and veggies into one juice.   Ideally, this would get us the nutrients he needs- a pound of spinach condenses down to a little juice and he could get a lot of nutrients by juicing.  It also gives us the opportunity to see if “pushing” his system will “stimulate” his gut and give us more clear answers to his multiple symptoms and reactions.  He took 1 sip, pushed it away and asked for his chips.  Yesterday the chips went ok, so I let him nibble on them again that day (the juice was avocado, spinach, melon, carrot, radish and peach- very small amounts of everything except peach).   He has had carrots a few times over the summer but has not had any of the other fruits/veggies.   That night- vomit.  I automatically think the potatoes are the culprit but it wasn’t following the potato chip timeline from the previous week…maybe it was the juice (carrot)?    How much further could we push him?  I want to stop, but I feel like it would be giving up….that we still have so many questions and did we fully follow through with the GI’s plan with these foods/trials?  In there we had also tried golden beets in his millet muffins, also Enjoy Life chocolate chips (which I have since found out have caused reactions in some corn allergic people so those will need to be taken out- which is fine because he wasn’t even interested in them! So, over the past month or longer we have tried a pretty large variety of food but we are getting nowhere, Is this enough?   

I was at the grocery store and picked up a few other things, some coconut milk in little juice box cartons – he thought that was pretty cool.   Of course, again with the processed food….but he really is losing interest in trying foods.   At first, he was excited when I was putting new foods on the table for him- the look on his face, as if he was saying “is my FPIES over? I can eat?”….because he didn’t want the foods I was offering, he was BEGGING for crackers, that his brother eats a lot with his lunches, he begged for fruit cups, cheese and yogurt- the snacks his brother eats….So, I got some SoDelicious coconut milk.  And again, he acted like it was Christmas morning- so excited over his own juice box!  “mine” and over and over again he said it.  The first night went ok, but enough questionable symptoms- I didn’t want to push him too much further after all he's been through and because coconut has been on the fence for almost a year since we’ve tried it a few times and don’t get through the trial for symptoms that show up- but always different and possibly not FPIES.   The next day, he asked for it again and I let him have some….6hrs. later, covered in vomit.   As with other nights, he falls asleep soon after the vomit and the TPN (IV hydration and nutrition) clearly helps his struggling body.   But even still, the next morning, he is really looking pale and off color.  I’m done, we’re done.   This is it- we’ve gone far enough, too far.    What have we learned through this?  

No comments:

Post a Comment